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.

RI Budget Adds $100M To Human Services

By Gina Macris

Rhode Island’s next fiscal year promises to turn a corner in restoring services for children and adults with disabilities with about $100 million in new funding and a new long-term plan to reassess the rates the state pays private service providers.

The House and Senate passed the $13.6 billion budget a week apart, with the Senate vote held June 23. The spending plan needs only the governor’s signature before it goes into effect July 1.

About a third of the funding, $35 million from the federal-state Medicaid program, will add $2.25 an hour to the rate paid direct care workers in the private sector who support adults with developmental disabilities. Their starting pay will increase from $15.75 to $18.

There also will be raises for supervisory personnel, but those figures have not yet been made pubic. A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said June 24 that the plan for the rollout is to have the raises released to providers July 1 so workers do not have to wait for retroactive checks.

The $35-million fund for wage hikes is part of a total Medicaid allocation of $390.3 million to the Division of Developmental Disabilities (DDD) at BHDDH, about $59.4 million more than in the current budget. The total includes $35 million for the raises, another $10 million to help private service providers move toward community-based services, and roughly $30 million for the operation of a separate state-run group home system. About 4,000 individuals are eligible for services from DDD.

Across the human services, the state budget also provides for:

• $13 million for repair of state-owned group homes

• $5.5 million in American Rescue Plan Act funding for early intervention services for infants and toddlers with developmental delays

• $4 million for a rate increase for early intervention providers

• $22 million toward rate increases for home-based treatment services (HBTS), personal assistance service support (PASS), applied behavioral analysis (ABA), and respite care

• $1 million enabling adults with developmental disabilities to acquire tablets and cell phones

Separately, the budget requires the health insurance commissioner to hire an outside consultant to conduct a comprehensive review of Medicaid rates paid all private human service providers working for state agencies in time to be incorporated in the state budget July 1, 2024. After that, the rates will be reviewed every two years, according to language in the budget.

The Senate had favored the same approach to rate review for all medical and clinical programs funded by the federal-state Medicaid program, but the House did not go along.

Tina Spears, executive director of the Community Provider Network of Rhode Island, said: “This budget sends a clear message that Rhode Islanders with disabilities, and the people that provide them with services, belong and are valued in our great state.”

She called the health insurance commissioner’s planned rate review a “historic investment” in a long-term plan to address a workforce crisis plaguing community-based supports for children and adults with disabilities and behavioral health conditions.

“The Senate has made the health and human services system a priority this legislative session, and because of the hard work of our legislative leaders, this budget will have an impact on everyday Rhode Islanders,” she said.

RI House Finance: Big Bucks for DD, Human Services

By Gina Macris

Last June, direct care workers serving adults with developmental disabilities in Rhode Island were making an average of about $13.18 an hour.

In July, 2021, their starting pay jumped to about $15.75 an hour. And beginning July 1, they will make about $18 an hour – a $2.25 increase - if the state budget passed by the House Finance Committee last week becomes law.

The latest proposed raise, costing about $35 million in state and federal Medicaid funding, has been driven by the state’s efforts to comply with federal court orders reinforcing a 2014 consent decree that requires a shift to community-based services as mandated by the Americans With Disabilities Act.

A central issue in the court case is an inability to attract enough workers to carry out the reforms. With the blame for the shortage on low wage scales, the state is under court order to raise the direct care rate to $20 by 2024.

In all, the House Finance Committee would allocate $390.3 million from the federal-state Medicaid program to the Division of Developmental Disabilities, about $59.4 million more than in the current budget. The total includes $35 million for the raises, another $10 million to help private service providers move toward community-based services, and roughly $30 million for the operation of a separate state-run group home system.

The privately-run system the state relies on to provide most services for adults with developmental disabilities has been underfunded for a decade, according to the state’s own consultants.

In a bid for new consulting work last fall, Health Management Associates said that in 2011, the General Assembly underfunded the recommendations of its Burns & Associates division by about 18 percent and didn’t catch up until the rate increases of 2021 – a decade later. That’s when direct care wages exceeded $15, a rate Burns & Associates had proposed for 2012.

Tina Spears, executive director of the Community Provider Network of Rhode Island, applauded the House leadership, including Speaker Joseph Shekarchi, Majority Leader Christopher Blazejewski, and House Finance Committee Chairman Marvin Abney for “putting working families first.”

This year’s spending plan also recognizes that the workforce shortage in developmental disabilities extends to all sectors of the human services.

The proposed budget would authorize the health insurance commissioner to oversee an outside review all private human service programs licensed or contracted to state agencies, with the aim of recommending fair market reimbursement rates.

Once the baseline is established, a rate review would occur every two years for privately-run programs used by BHDDH, the Department of Human Services, the Department of Children, Youth and Families, Department of Health, and Medicaid.

The baseline analysis of Medicaid reimbursement rates would enable Rhode Island to become more competitive in attracting caregivers and the periodic rate review would prevent the system from slipping below market rates in the future.

“I’m excited about that. We’re doing something we’ve never done before,” said Sen. Louis DiPalma, D-Middletown, of the proposed changes in the way the state would approachMedicaid reimbursement for private human services.

The comprehensive review and the biennial rate update may seem mundane to many people, but ”it’s a critical thing to vulnerable populations in the state,” DiPalma said.

He and Rep. Julie Casimiro, D-North Kingstown, sponsored companion stand-alone legislation calling for the two-step rate review process.

Spears, the CPNRI director, called the budget an “investment in Rhode Island’s most vulnerable populations.” It sends a “clear message that people of all abilities should be able to access the care they need to live full, inclusive lives in our communities,” she said in a statement.

The House Finance Committee shifted responsibility for the comprehensive rate study from the Executive Office of Human Services to the health insurance commissioner and eliminated a community advisory committee that some critics said might pose a conflict of interest.

The committee also extended the deadline for the initial review for several months, until October, 2023. The extension means that rate changes could not be enacted until mid-2024, instead of next year, as DiPalma and Casimiro had hoped.

In separate legislation, DiPalma and Casimiro had called for a companion baseline study and biennial rate reviews for all Medicaid-funded medical and clinical programs in the state, but these services were not included in the House Finance Committee’s budget. There were substantial one-time reimbursement rate increases for some medical services, like maternity labor and deliver and dental care.,

Other initiatives aimed at strengthening children’s services and mental health come from federal American Rescue Pan Act (ARPA) funding. They include:

• $30 million for community behavioral health clinics

• $12 million for a children’s residential psychiatric treatment center

• $8 million for a short-term stay unit at Butler Hospital, the state’s only private psychiatric hospital for adults

• $7.5 million to shore up pediatric primary care, which lost capacity during the COVID-19 pandemic

• $5.5 million to attract early intervention professionals and reduce waiting lists for therapy among infants and toddlers with developmental disabilities.

Developmental disabilities spending for adults, meanwhile, contains about $10 million in expenses to conform with an in “Action Plan” the state proposed last fall to avoid a hearing over contempt allegations over non-compliance with the consent decree.

Most of that money, $8 million in federal-state Medicaid money, would continue a “transition and transformation fund” to help private agencies and those who direct their own service program change over to individualized, community-based services. Two million of the $8 million would be reserved for the “self-directed” individuals and families.

Another $1 million would fund technology like cell phones and tablets for adults with developmental disabilities to give them access to the same tools that many people take for granted today. And $1 million would provide for state infrastructure to implement and manage compliance with recent consent decree initiatives.

The full House will consider the overall proposed state budget- $13.6 billion - on Thursday.

Low RI Medicaid Rates Strain All Healthcare Services, Witnesses Say

By Gina Macris

Annette Bourbonniere

Without a personal care assistant, Annette Bourbonniere of Newport needs up to five hours each day to get herself dressed in the morning.

For the past year, she hasn’t been able to find regular help for a position that pays $15 an hour, the Rhode Island-approved Medicaid rate for the services she needs, unchanged for the last 18 years.

Not only is it impossible for her to engage in productive activity, Bourbonniere says, but “I worry every day how I am going to survive.”

Bourbonniere, seated in a high-backed power chair, was one of hundreds of people from all walks of life who converged on the Senate Finance Committee April 28 to hammer home the message that the state’s Medicaid program is broken.

The witnesses testified for a cluster of bills which, taken together, would stabilize Medicaid-funded services with one-time rate increases and set up a rate review process every two years, with a 24-member committee drawn from the community advising the Executive Office of Health and Human Services (EOHHS). There is no estimate of the overall cost of the bills.

In a letter to the Senate Finance Committee, the Director of Administration, James E. Thorsen, and the acting Secretary of Health and Human Services, Ana P. Novais, indicated that the prospects for immediate changes appear gloomy.

Thorsen and Novais said there are 74,000 separate Medicaid rates in the state’s program, all of which cannot be revised in one year as the legislation requires. A rate review “of this magnitude” would take at least five years, they said.

They said the bill establishing a 24-member advisory committee for Medicaid rate review instead might be seen as “establishing policy and rate setting”, rather than advising EOHHS, the agency with the legal authority to set rates.

There is also an appearance of a conflict of interest in that the potential make-up of the committee includes members who would be recommending rates for other members of the same group, Thorsen said.

Support for Medicaid reform remains uncertain in the House, where Rep. Julie Casimiro, D-North Kingstown, has organized companion legislation adding up to a Medicaid overhaul..

At the outset of the hearing, State Sen. Ryan Pearson, D-Cumberland, the chairman of the Senate Finance Committee, said the Senate has already made Medicaid reform one of its top priorities in the current session.

Louis DiPalma

The legislation was spearheaded by Sen. Louis DiPalma, D-Middletown, first vice president of the Senate Finance Committee, who received repeated praise from the speakers for his relentless focus on equity issues in the human services.

Dozens of witnesses told the committee that the reimbursement rates to community-based health and social service programs fall so far below costs that:

• Access is shrinking to out-patient services that can prevent costly hospitalizations and even life-threatening situations.

• Caregivers ranging from doctors and dentists to nursing assistants and personal assistants to those with disabilities are either leaving their fields or leaving the state.

• Hospitals are left to deal with more patients who have nowhere else to go, while they lean on private insurers for more money to fill the gap. In the end, those who buy private insurance must foot the bill for escalating premiums.

According to the testimony:

• Four hundred infants with special needs are waiting for early intervention services to which they are legally entitled.

• Nearly six hundred elderly are waiting for home care services that will prevent them from going into nursing homes.

• Almost 200 children and youth are waiting for psychiatric care, sometimes in hospital emergency rooms.

Sherrica Randle

At the hearing, Sherrica Randle said her 13-year-old daughter has been hospitalized three times in the last six months for behavioral issues. During the most recent episode, her daughter spent nearly two weeks in the emergency room of Newport Hospital for lack of a pediatric psychiatric bed at Bradley Hospital, Randle said.

Elsewhere, a teenage girl who had made a “serious” suicide attempt nevertheless had to wait four months for mental health services, according to Alexandra Hunt, clinical director of Tides Family Services.

The COVID-19 pandemic exacerbated the labor shortage in front-line human services but many agencies have struggled for years to pay enough money to prevent workers from leaving the field, the witnesses said. Jamie Lehane, President and CEO of Newport Mental Health, said he had to sell a building a few years ago to continue making payroll and avoid a shut-down.

Like other community social service and home care agencies, providers of services for adults with developmental disabilities can’t get qualified personnel to work for Medicaid-approved rates, starting at $15 an hour.

These providers compete with retail and fast food chains, which pay more for jobs that are less demanding, said Casey Gartland, representing the Community Provider Network of Rhode Island, a trade association.

Unlike other sectors of the Medicaid program, services for adults with developmental disabilities are subject federal oversight because of a 2014 civil rights consent decree and several court orders, one of which requires the state to raise wages to $20 an hour by 2024.

The proposed budget of Governor Dan McKee would raise the wages of front line developmental disability workers to $18 an hour as an intermediate step on July 1.

But the most recent data about the workforce and inflation has prompted DiPalma to sponsor legislation that would raise the pay of developmental disability workers to $21 an hour on July 1. Rep. Evan Shanley, D-Warwick, has filed a companion bill in the House.

The Rhode Island Federation of Teachers and Health Professionals held a press conference in favor of that proposal just before the start of the hearing on Medicaid reform.

Doctors, dentists, and hospital executives testified in person and in writing that the state’s Medicaid program has a ripple effect on the healthcare of all Rhode Islanders.

The case of Women and Infants Hospital, where 80 percent of Rhode Island mothers give birth, illustrates that point.

Shannon Sullivan

Shannon Sullivan, President and CEO of Women and Infants, said it is the ninth largest stand-alone maternity hospital in the United States.

Nearly forty-five percent of its revenue comes from Medicaid Managed Care, which pays half of the Massachusetts managed care rate for obstetrical births, she said.

Simple math shows that the situation is unsustainable, she said. “This is not an issue that will go away, and it is not an issue that we have much time on,” Sullivan said.

Without Women and Infants, women experiencing difficulties in their pregnancies would have to go to Boston or New Haven to receive the same level of care, she said.

Gail Robbins, senior vice president of Care New England, the parent company of Women and Infants, said that because of low Medicaid rates, hospitals must put pressure on private insurers, whose rates are 200 to 300 percent more than Medicaid.

“It’s not a healthy bottom line,” Robbins said.

DiPalma said hospitals are not awash in cash. They absorb considerable costs in uncompensated care of uninsured patients, and must pay hefty licensing fees to the state, he said.

The Department of Administration and EOHHS support the programs funded by Medicaid and recognize the need for regular rate reviews, Thorsen and Novais said.

But “any changes to the rate setting process should be carefully measured and balanced to avoid significant negative funding impacts of other important programs such as education, public safety, and natural resources,” they said in their letter.he said.In their letter,

The state already spends 40 percent of its general revenue on human servicesm the two administrators said. By comparison, Massachusetts pays considerably more on the human services, up to 56 percent of its budget, according to DiPalma.

Others at the hearing saw the situation as a question of values.

Bourbonniere, a consultant on accessibility and inclusion, said she was dismayed when she attended an online meeting with EOHHS officials last fall and they said at the outset, with apparent pride, that Rhode Island has a lower Medicaid expenditure per person enrolled than the median in the United States.

For her and others going without services, “this was crushing,” she said in a letter to the committee.

Paying personal care assistants and other essential workers a living wage contributes to the state’s economy in the goods, services, and taxes they pay and the businesses they support, Bourbonniere said.

These essential workers also enable people with disabilities to earn a living. “Isn’t that better than the current investment in maintaining poverty,” she said.

The bills heard April 28 are:

• S2200- provides a rate-setting review every two years for all medical and human service programs licensed by the state or having a contract with the state, including those funded by the federal-state Medicaid program.

• S2306 - provides one-time increases to base rates in the Medicaid program for home care services

• s2648 - funds pass-through wage increases to those who work in long-term care in the community with $17.7 million in the established “Perry-Sullivan” law, rather than allowing the governor to use one-time funding from the American Rescue Plan in the next budget. Proponents say the state could be penalized by the federal government from using ARPA to replace or “supplant” existing funds.

• S2311 - provides for a 24-member advisory committee to EEOHS for the rate-setting process

• S2546 - provides for one-time Medicaid rate increases to early intervention and outreach programs for young children with special needs.

• S2588 - provides one-time increases to Medicaid rates for dental services and includes chiropractic care for the first time in the Medicad program.

• S2598 - increases the daily reimbursement rate to nursing homes by 20 percent for single-occupancy rooms with private bathrooms.

• S2884 - Provides a substantial increase to the Medicaid managed care rate for hospital births

• S2597 - eliminates the need for annual eligibility review for the eligible for the federal Katie Beckett program for children with disabilities, as long as a doctor says their condition is unlikely to change. the bill also allows families of eligible children to request additional service hours.

  All photos from Capitol TV

Tina Spears To Challenge Blake Filippi For House Seat

By Gina Macris

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), has announced she will run for the House seat now held by House Minority Leader Blake Filippi. 

Spears is the first Democrat to challenge Filippi since he was first elected to the House in 2014. 

Spears, a Rhode Island native and Charlestown resident for the last 30 years, is known at the State House as a persistent advocate for people with disabilities.  

Spears said, “I am excited to announce that I am running for State Representative in District 36, to bring the voices of my southern Rhode Island neighbors to the State House. 

She said the district she hopes to represent wants quality education, good jobs that keep people in their communities, and preservation of the environment of the beautiful coastline towns of  Charlestown, South Kingstown, Westerly and Block Island. 

Spears filed campaign papers with the state Board of Elections March 11.  

As executive director of CPNRI, Spears represented private providers of social services for adults with developmental disabilities in court-ordered negotiations which resulted in significant wage hikes for direct care workers last July.  

She also has been instrumental in the last year in organizing a broader coalition of more than 60 organizations to lobby for a living wage for frontline workers in a wide range of human service programs licensed by the state.  

Spears formerly worked as an analyst in the Senate fiscal office and as the coordinator of the state’s compliance with a 2014 civil rights decree affecting adults with developmental disabilities.  

She has a masters degree in public administration from the University of Rhode Island.  

Her path to advocacy began with her first son, Taquonck, who suffered a birth injury that resulted in significant disabilities.  

Spears said, “I love southern Rhode Island. I am part of the fabric of this community. And I know how to make change at the State House. I’m looking forward to an active campaign knocking on doors and hearing from neighbors - so I can effectively bring our community’s voices to the State House with me.” 

Filippi, one of the most prominent Republicans in the state, was regarded as a likely candidate for governor until he announced in December that he would run for re-election from his District 36 seat.  

He was first elected as an Independent in 2014 and later switched to the Republican party. A lawyer and organic cattle farmer, Filippi lives on Block Island.  

Bills Would Set Competitive Rates For All RI Human Service Workers

L TO R, Rep. Julie Casimiro, Sen. Louis DiPalma, Christina Battista. Audience Applauds Battista While DiPalma Hands Battista’s Notes to Battista’s Personal Care Assistant, Center.

By Gina Macris

Christina Battista, a supported employment coordinator for Skills For Rhode Island’s Future, says she never would have been able to earn a master’s degree or hold a job if it weren’t for a personal care assistant.

“Someone is literally my hands,” says Battista, who has a physical disability. Her personal care assistant helps her shower, cook, do laundry, take her shopping, help her meet up with friends, “and so much more.”

“Being able to live, rather than just exist, means more to me than I can express in words,” she said.

Likewise, Patricia Sylvia says she wouldn’t have been able to live happily at home for three and a half years after her stroke if it hadn’t been for a certified nursing assistant who helped her with everything from bathing to laundry to cleaning.

But Sylvia’s caregiver died last August. As a result, she’s lost 15 pounds and she feels her health and independence are threatened.

A wide range of medical and human service programs established to serve Sylvia and Battista and hundreds of thousands of others are facing a critical workforce shortage caused, in large degree, by the state’s low reimbursement rates for the pay of direct care workers.

Sylvia and Battista both spoke at a State House press conference March 8 in support of companion legislative bills that would address the critical need for direct care workers through mechanisms designed to set fair market pay rates every two years.

All members of the Senate have signed on as co-sponsors of legislation introduced by Sen. Louis DiPalma, D-Middletown setting up a rate review process that draws community representation into an advisory committee working with the Executive Office of Health and Human Services (EOHHS).

DiPalma said it’s the first time in his 14 years in the Senate that any of his bills has received unanimous support from his colleagues.

“This is about investing in hundreds of thousands of Rhode Islanders to ensure they have the services they need, for which they’re eligible, and for which the state is authorized,” DiPalma said.

Rep. Julie A. Casimiro, D-North Kingstown, has introduced the same legislation in the House; one bill aimed at reimbursements for privately-run human service programs licensed by the state and another for medical and clinical programs.

”Our health care system is suffering a crisis of care that has only gotten worse because of the pandemic,” Casimiro said.

“Severely underpaid” direct care workers in an “understaffed and under-supported” system are crossing the Rhode Island border to find better-paying jobs outside the state, she said.

Maureen Maigret, a decades-long advocate for the human services, said, “Everyone would rather get services at home, and it is also the clear law of the land that services be provided in the least restrictive setting possible.

And yet we have failed to build the kind of system that allows this, largely because we have failed to recognize the value of our direct care workers.”

Patrick Crowley, Secretary-Treasurer of the Rhode Island AFL-CIO, spoke from the workers’ perspective. “When working people are uplifted and they can lift up the community that they service, our entire community here in Rhode Island is better off.”

Crowley added: “If these bills can build the scaffolding we need, I say, let’s do it.”

In each case, the rate-setting process would be conducted every two years by the EOHHS with the advice of a 24-member advisory committee.

Tina Spears, executive director of the Community Provider Network of Rhode Island, said “Everyone deserves a living wage.”

“This solution would evaluate the costs” faced by providers and respond to them, she said.

Because the legislation would not have an immediate impact, Rhode Island must use some of its unspent funds from the American Rescue Plan Act to shore up human service agencies, Spears said.

The legislation gives EOHHS until March 1, 2023 to complete the first rate review recommendations to the governor and the General Assembly.

EOHHS would collect data from the state’s Medicaid administration, the state Department of Health, and agencies responsible for addressing poverty, child welfare, mental and behavioral health, developmental disabilities, and aging.

Then EOHHS would analyze the data in conjunction with separate 24-member advisory committees for medical and human services programs.

“It will cost money two years from now, but this is money we should invest,” DiPalma said, so that the state never again goes back to a situation in which a lack of staff forces infants and toddlers with developmental disabilities to wait for early intervention, as they have in recent months.

At least two other states, Massachusetts and Colorado, have adopted similar rate-setting processes, DiPalma said.

He noted that in Massachusetts, health and human services makes up 56 percent of the state budget, although that doesn’t mean Rhode Island should invest the same proportion in its human services sector.

At the same time, DiPalma said, Rhode Island is accountable for a wide swath of services, including child welfare, services for those with disabilities and the elderly, medical care for the poor, and behavioral health and substance abuse programs, among others.

Without a change in the way the state sets rates, those services will become increasingly unavailable, he said.

In 2014 a lack of integrated community-based services for adults with developmental disabilities resulted in a consent decree with the U.S. Department of Justice that is still dogging the state.

In that case, a review of rates paid to private providers of developmental disability services is underway under court order.

For the full text of the bills, follow these links: S 2311, S 2200, H 7180, H 7489

New Relief Funding Welcome, But Forum Says Caregivers Still Undervalued

By Gina Macris

In the last week, both Rhode Island and Massachusetts have taken steps to slow the exodus of workers from the community-based human service agencies the states depend on for critical mental health and social services.

The problem is that, through the federal-state Medicaid program, states set rates for human services workers in the private sector far below the salaries they pay state employees to do comparable work. The pay for private-sector human services jobs also lags behind he starting wages at major employers such as Amazon and Costco.

The two states are taking a variety of actions to raise pay and make the jobs more competitive, but a panel of human service executives from Connecticut, Massachusetts and Rhode Island says one-time infusions of cash do not address the core issue.

Massachusetts Governor Charles Baker is poised to sign a bill that passed both houses of the Massachusetts legislature last week giving $30 million in coronavirus relief funding to human service agencies to stabilize the workforce and provide college loan relief to workers.

In Rhode Island, the governor and the leadership of the House and Senate agreed Dec. 6 to use nearly $50 million in relief funds to re-open early intervention programs to new referrals and shore up staffing for agencies caring for children removed from their homes, child-care providers, and pediatric primary care medical practices.

The General Assembly also promised to tap $57.4 million in enhanced Medicaid reimbursements to support workers in home and community-based services, as long as the federal government approves that use for the money.

“It’s a step in the right direction,” said Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), of the announcement by Governor Dan McKee, House Speaker Joseph Shekarchi, and Senate President Dominick Ruggerio.

As she spoke, she was helping to lead a tri-state virtual public forum on the plight of nonprofit human service organizations – and how to stabilize them.

The forum described a regional slice of a national problem which threatens the quality of life essential to a thriving economy, the speakers agreed.

Community-based human service organizations, which provide a wide array of services, are the “connective tissue of the economy,” said Rhode Island Rep. Liana Cassar, speaking to more than 200 people in Connecticut, Massachusetts and Rhode Island who were listening or watching the two-hour presentation.

In the long run, one-time fixes, like coronavirus relief funds, will not address a system that has been long undervalued, Cassar said.

The pandemic did not create the problem, all agreed. Instead, it served as an accelerator.

Massachusetts State Senator Cindy Friedman said legislators were “blown away” by the statistics provided by non-profit human service agencies during State House testimony.

Massachusetts benchmarks the wages of employees in community-based human service organizations to a median of $16.79 an hour, said Michael Weekes, CEO of the Providers’ Council, a trade association of more than 220 community agencies that serve all types of people in need.

That median wage lags behind even starting wages at several large employers. Costco starts at $17 an hour and Amazon hires at a minimum of $18 an hour in Massachusetts, Weekes said.

“We just can’t compete,” he said. State employees in the human services make an average of $1,274 a week, but those in the private sector doing similar work get an average of $548 a week – a gap of more than 100 percent, Weekes said.

And whatever Connecticut and Massachusetts are paying for health and human services, Rhode Island is below that, said State Sen. Louis DiPalma. Rhode Islanders seeking better pay live within minutes of the Massachusetts and Connecticut borders, he said.

“We are treading water and taking on water,” said Spears, the director of CPNRI. The low salaries in human services have impacted the quality of life for a disproportionate number of minorities and women. They are essential workers, just like firefighters, police, and teachers, and should be treated that way, she said.

The consequences of the workforce shortage have become dire:

In Rhode Island, all nine early intervention programs for infants and toddlers with developmental delays were closed to new applicants programs at the end of November – a situation that is expected to soon be reversed soon with Governor Dan McKee’s release of $3.6 million in coronavirus relief funds from the CARES Act. That was part of the relief package announced Monday, Dec. 6.

In Connecticut, State Rep. Catherine Abercrombie said she had been hearing that a lack of mental health workers is an underlying issue in the three-day closure of one high school that had received threats of violence. Hamden High School, closed last Friday and again Monday and Tuesday. It reopened Wednesday with heighten security, and school officials planned to beef up mental health services, according to local news reports.

Diane Gould, CEO of Advocates, a large human services provider west of Boston, connected school violence and suicide risks to children’s mental health concerns.

The number of children who have attempted suicide increased “significantly” over the summer, she said. In August, her organization saw four children aged 11 to 17 who had tried to kill themselves.

“As many as 50 percent of the kids we’re seeing have aggression, suicidal thoughts, and anxiety,” she said, and there has been a 46 percent increase in calls to Advocates’ information and referral line since the pandemic struck in 2020, she said.

“There has been a terrible convergence of inadequate staffing with a dramatic increase in need,” she said.

Gould and other providers said they have been forced to create waiting lists for critically needed services or have stopped taking new cases.

In Rhode Island, service cuts for adults with developmental disabilities violate a 2014 civil rights consent decree that was supposed to bring them 40 hours a week of supported employment and individualized activities of their choice in their communities.

To keep staff from quitting, some providers described raises, signing bonuses, and other incentives they have given in the last few months – even though they are overspending their budgets.

“It’s a little nervous-making,” said Chris White, CEO of Road to Responsibility, provider of services to adults with developmental disabilities on the South Shore of Boston. “We’re doing this with one-time funds,” he said. “If there are Massachusetts legislators on this call, I hope you are hearing that. We are eating into our reserves.”

Abercrombie, the Connecticut legislator, said “this is a crisis.” The state still has $300 million in coronavirus relief funds to allocate, “and I’m glad we do,” she said.

The non-profit human service sector is a “vital business,” said Cassar of Rhode Island. “Our families depend on it and our economies depend on it,” she said.

“When people say, ’We need to bring well-paying jobs to Rhode Island,” they should be told, ‘We have jobs in Rhode Island. We need to make them well-paying,’” she said.

State senators DiPalma in Rhode Island and Friedman in Massachusetts have sponsored bills to permanently raise the pay of caregivers in the non-profit sector. Friedman’s bill would link salaries to the amount Massachusetts pays state employees for similar work, with a phase-in period of five years.

DiPalma has introduced a bill for several years that would fix minimum pay at at 55 percent above the state’s minimum wage, although he says he considers it a “work in progress.” DiPalma plans to re-introduce a revised measure in January.

Rhode Island will have a court-ordered review of the rates paid to private providers of developmental disability services, many of whom are members of Spears’ organization, CPNRI. A federal judge has ruled that without such a rate review, Rhode Island’s developmental disability system cannot fund the changes necessary to comply with the 2014 consent decree.

But that review will not affect other segments of the non-profit human services.

DiPalma said, “When we, the legislators, value the profession of the front-line workers, we will address the issue. Anything else will be a band-aid.”

DiPalma, the first vice president of Rhode Island’s Senate Finance Committee, acknowledged that solving the crisis is “categorically in the hands of the legislature.”

He said that every day, citizens should be asking their legislators what they are doing for the public. he said.

Meanwhile, Monday’s announcement by McKee, Shekarchi and Ruggerio signals the release of significant coronavirus relief funding in the short term:

• $38.5 million for children, families and social supports; $32 million to small business; $29 million to housing; and $13 million to tourism and hospitality industries; all from a total of $113 million in what McKee calls his “Rhode Island Rebounds” plan, funded by the American Rescue Plan Act (ARPA).

• $57.4 million from the enhanced federal Medicaid match, which community-based agencies may use to shore up their workforce through hiring bonuses, raising pay and benefits, shift differentials, and other incentives

The three leaders also announced funding to supplement the human services portion of McKee’s “Rhode Island Rebounds” plan:

• $ 6 million for childcare providers, on top of the $13 million in the original plan. Ruggerio, the Senate president, said, “Childcare is a top priority. We can’t get people back to work if they can’t get childcare.”

• $3.64 million from unspent CARES Act funding for early intervention, in addition to the $5.5 million McKee originally put in Rhode Island Rebounds.

The House Finance Committee is expected to vote next week on the funding. The unusual display of unity among the executive and legislative leadership of state government Monday signals swift passage of the funding measures. (McKee does not need legislative approval to release CARES Act funding.)

Rhode Island is the only New England State that has not spent any ARPA funds, and critics have put increasing pressure on the General Assembly in recent weeks to take action on McKee’s proposal, especially after the start of a waiting list for early intervention services last week.

View the entire public forum on YouTube: https://www.youtube.com/watch?v=PLS18en74A8

RI Dodges Contempt With DD Action Plan

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI Proposes DD Action Plan To Avoid Contempt Of Court

By Gina Macris

The state of Rhode Island would raise the pay of caregivers for adults with developmental disabilities to $20 by mid-2023 as part of an “action plan” submitted Tuesday, Oct. 19, to fend off a contempt hearing in federal court over continued violations of a 2014 consent decree mandating the integration of this population in their communities.

The contempt hearing, which had been scheduled to begin Oct. 18 and run through Oct. 22, was canceled last week without explanation by Chief Judge John J. McConnell, Jr., of the U.S. District Court. There previously had been indications the state was working on a settlement proposal.

The action plan also promised that workers would get an interim raise, from $15.75 an hour to $18 an hour, to take effect July 1, 2022, as well as the development of an “intensive” and coordinated statewide initiative involving the Department of Labor and Training, the Community College of Rhode Island, and other organizations to recruit and retain skilled candidates to fill gaps in the workforce necessary to support adults with developmental disabilities who want to be integrated into their communities.

In addition, a total of $12 million would be set aside for a “transformation fund” aimed at supporting private service providers as they go through the first two parts of a three-part transition period from a system originally framed around segregated group care to one that promotes individualized services in the community. Of the $12 million total, $2 million would be reserved to help families who self-direct their own programs, essentially acting as independent employers and program directors for staff serving individual loved ones.

The remaining $10 million would be divided into grants to enable provider agencies to begin shifting to integrated services during the next 12 months, with provisions for considering more funding to expand program innovations during a third phase.

In addition, the action plan commits the state to setting aside $2 million to help adults with intellectual and developmental challenges acquire technology. While smartphones and tablets have become ubiquitous, many adults with developmental disabilities do not have access to the internet.

Overall, the plan appears to conform to several orders issued by McConnell since the summer of 2020 to bring the state into compliance with the consent decree.

A permanent budgetary, operational, and bureaucratic framework for a new developmental disabilities system would emerge from a rate review study that is expected to begin in coming weeks. The Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) plans to award the contract by Nov. 1. BHDDH originally required the work to be done in six months, but the action plan said the deadline will be December 1, 2022, a little more than a year from now.

The governor’s budget proposal for the fiscal year beginning July 1, 2022 (Fiscal Year 23) “will recognize” preliminary recommendations of the rate review consultants, and “the State will work in good faith to incorporate the reasonable recommendations set forth in the final rate review project” in the governor’s following budget proposal for the fiscal year beginning July 1, 2023 (Fiscal Year 24), the action plan says.

Because the state needs to expand the workforce and hike wages to deliver on the individualized, community-based supports required by the consent decree, reforms are expected to require a significant financial commitment by the General Assembly.

The upcoming rate review would add dollars and cents to the picture and include recommendations for reimbursement models that would stabilize the finances of provider agencies. Providers say the current fee-for-service model does not pay their actual costs, including free care often given to individuals while the agencies appeal service cuts.

The monetary changes and any new provider reimbursement model would have to be approved by the General Assembly. To move forward, the action plan also needs approval from the U.S. Department of Justice and the court..

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

Coalition Seeks $100M To Fix RI Caregiving Crisis

By Gina Macris

Rhode Island Governor Dan McKee and the leadership of the House and Senate say they are working on solutions to the staffing crisis that has constricted access to healthcare and social services for people of all ages with disabilities or special needs.

McKee made his first move Oct. 7 by proposing a wide-ranging budget amendment that includes $12.5 million in retention bonuses for direct care staff of private providers of services to children in state care, and another $5.5 million to stabilize early intervention services to very young children with developmental disabilities and their families.

Four of nine agencies providing early intervention services have stopped taking new cases, the governor said. One in four families slated for early intervention in 2020 did not complete the program. And since the start of the pandemic, there has been a 30 percent reduction in beds available to the Department of Children, Youth, and Families (DCYF), leaving some children in hospital psychiatric programs where they do not belong, and creating waiting lists for services.

The statement from McKee’s office said the situation has left DCYF in jeopardy of violating Family Court orders on placing children in residential programs consistent with their therapeutic needs.

These targeted increases, totaling $18 million, amount to “the tip of the iceberg” in addressing the labor shortages and service gaps affecting all of the state’s most vulnerable populations, says a spokeswoman for a coalition of 70 human service organizations with about 35,000 to 40,000 employees.

Tina Spears said $100 million is the minimum the state must invest to stabilize the workforce serving children and adults with developmental disabilities, youth and adults with substance abuse and behavioral healthcare needs, those with other mental health issues, and elderly people trying to remain in their own homes. Spears is executive director of the Community Provider Network of Rhode Island, a trade association whose members provide developmental disability services.

A day before McKee released the budget amendment, a spokeswoman for the governor, in response to questions from Developmental Disability News, said that he and his team “absolutely understand there are workforce challenges affecting our health and human service providers, and recognize the need for federal funding to ensure access to services for Rhode Islanders.”

And spokesmen for House Speaker Joseph Shekarchi and Senate President Dominic Ruggiero said, in a joint statement, that the two leaders are “aware of the crisis and working with their colleagues and stakeholders. They are willing to consider solutions.”

McKee’s overall spending plan totals $113 million. It would mark the state’s first use of its $1.1 billion allocation from the American Rescue Plan Act (ARPA). The governor characterized it as a “down payment” on Rhode Island’s future.

He proposes that $32 million go to small business, $13 million to the tourism and hospitality industry, $29.5 million to affordable housing and $38.5 million to the human services, including early intervention and children in DCYF care, as well as child care providers, and pediatric health care providers.

Rhode Island is the only New England state that has not spent any of its ARPA allocation.

In a letter to General Assembly leaders and the governor last month, the coalition of human service providers referred to other potential sources of additional aid. The organization asked the state to stretch the state’s investment in the human services workforce by using an enhanced federal Medicaid reimbursement rate for home and community services and dipping into a $51-million budget surplus for the fiscal year that ended in June.

“We simply cannot wait to respond to the current crisis until January, particularly when there is funding available today,” said Spears.

The pandemic has exacerbated a pre-existing worker shortage to crisis proportions, threatening the collapse of the privately-run network of services that in many cases, recipients are entitled to by law.

Higher caseloads and stressful conditions “have led to increased turnover, lower morale, and unparalleled levels of burnout among existing staff,” the coalition wrote in a letter to the governor and General Assembly leaders in late September.

The coalition leaders are Spears, Susan A. Storti, President and CEO of the the Substance Abuse and Mental Health Leadership Council of Rhode Island, and Tanja Kubas-Meyer, executive director of the Rhode Island Coalition for Children and Families.

The state of the developmental disabilities system, which is involved in a federal court case, illustrates the challenges faced by all the caregiving organizations across the board.

In January, 2020, two months before COVID-19 struck Rhode Island, the state’s own consultants found that some three dozen private providers of developmental disabilities services were on shaky financial footing because of inadequate funding to attract and retain enough skilled, trained workers.

In April of this year, some of the same consultants, who were no longer working for the state, found that adults with developmental disabilities living with their families experienced about a 72 percent reduction in the duration of support services they had before the pandemic.

Those in shared living and independent living situations had service reductions of 57 and 49 percent, respectively, according to the consultants.

While the General Assembly approved funding effective July 1 which raised the pay of direct care workers and their supervisors about $2 to $3 an hour, it is not known what impact, if any, the increases have had on attracting new staff.

Connecticut, Massachusetts, and Rhode Island’s own state-run group home system all pay more than the $15 to $15.75 an hour that employees of the private agencies now receive.

An independent court monitor found that the state’s failure to maintain an adequate workforce continues to violate a 2014 consent decree calling for the overhaul of the service system to provide adults with developmental disabilities individualized support services to help them become part of their communities.

With many adults with developmental disabilities sitting at home for much of the week, and only two and a half years remaining in the term of the consent decree, the state’s next steps remain unclear.

Unless Rhode Island can reach an out-of-court agreement with the monitor, the U.S. Department of Justice, and the Chief Judge of the U.S. District Court, the state must defend itself against civil contempt charges in a hearing that begins Oct. 18. If it is found in contempt, the state faces fines of up to $1.5 million a month.

DOJ Seeks Fines Up To $50K Daily For Rhode Island’s DD Consent Decree Noncompliance

By Gina Macris

The US. Department of Justice has proposed fines up to $1.5 million a month against the state of Rhode Island for failing to comply with a civil rights consent decree protecting adults with developmental disabilities during the last seven years.

The proposed fines are part of a preliminary filing in connection with a contempt hearing scheduled for mid-October by Chief Judge John J. McConnell of the U.S. District Court.

“The United States has sought for several years to work with the State regarding its noncompliance, to no avail,” said the DOJ lawyers.

In a memorandum to McConnell, the DOJ said that the state has fallen far short of numerical targets for providing services for integrating adults with developmental disabilities in their communities, both for employment and non-work activities.

Nor has the state kept its promise to provide adequate funding to maintain the number of agencies and workers needed to provide these services, the DOJ said. Then-governor Lincoln Chafee signed the consent decree April 8, 2014.

If necessary, the DOJ said, it will present evidence in October that state “failed even to ask its Legislature for a sufficient appropriation” and that it “failed to make efficient use even of the resources it had – for example, by failing to modify State rules and incentives that favor providers of less integrated services over providers of more integrated services.”

Those “rules and incentives” allude to Project Sustainability, a ten-year old fee-for-service reimbursement model that still allocates 40 percent of a recipient’s service hours to segregated, center-based care.

The DOJ said the court should “impose a reasonable fine on the state to incentivize it to rapidly come back into compliance with the Consent Decree, and to compensate for the state’s current underfunding of services.”

The proposed schedule of fines:

• $500,000 on the first day of the month for the first two months after a judicial finding of contempt.

• $50,000 a day, or about $1.5 million a month, beginning on the 70th day after a contempt order. The money would be deposited in a special fund to be used for consent decree compliance. The state should be prohibited from paying the fines out of any funding that otherwise would benefit Rhode Islanders with disabilities, the DOJ said.

McConnell has cleared the week of Oct. 18 through Oct. 22 to hear evidence in the contempt proceedings. The consent decree draws its authority from the Integration Mandate of the Americans With Disabilities Act, as reinforced by the Olmstead decision of the U.S. Supreme Court.

To help remedy any contempt finding and lessen fines, the state could increase the number of supported employment placements and expand the service hours of integrated daytime activities in accordance with the consent decree, the DOJ said.

In a separate step, the DOJ asked McConnell to order the state to prepare a plan for funding and complying with the consent decree before its term ends June 30, 2024. Such a document could help remedy the contempt and, with the court’s approval, could be incorporated in the existing decree.

By its own account, the state has missed its employment targets by more than a third for people in two categories of the consent decree population. They are the “Youth Exit” group, adults who left high school between 2013 and 2016, and the “Sheltered Workshop” group, those who once worked for subminimum wages in sheltered workshops, which were eliminated in 2018.

The chart below, from the state’s report to the court for the quarter ending March 31, shows employment in relation to the latest consent decree targets for a 12-month period. While part of the slow growth during 2020 might be attributed to the COVID-19 pandemic, the state had been falling further behind in previous years.

In another category, only 55 percent of adults are participating in integrated non-work activities in the community for slightly less than ten hours a week, on average, and only a fraction have a combined schedule of employment and other activities in the community filling more than 20 hours a week, according to the latest report of an independent court monitor, cited by the DOJ. In the consent decree, the state agreed to fund services for a total of 40 hours a week.

The DOJ also cited the monitor’s assessment that the state lacks the workers and the funding necessary to provide the services to comply with the consent decree.

Consultants from Approach Group, a Boston-based firm, have calculated the worker shortage at more than a 1000 of the 2845 direct care staff it said are needed to support Rhode Islanders with developmental disabilities in the community.

Separately, Approach Group and three other consultancy firms participated in 18-month, $1.1 million analysis of the developmental disabilities system commissioned by the state that found fiscal instability in the private provider system, which the state relies on for compliance with the consent decree.

The organizer of the four firms, the New England States Consortium Systems Organization (NESCSO), submitted its final report July 1, 2020, to the state Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH), laying out various options for alternatives to the state’s fee-for-service reimbursement system.

But the state’s subsequent budget deliberations did not address the NESCSO report or the needs it identified.

Instead, it appeared that BHDDH and Governor Dan McKee’s initial budget proposal responded to a directive from the Office of Management and Budget for a 15 percent budget reduction across the board.

In the end, Judge McConnell ordered state officials and providers to negotiate a wage hike in an effort to attract more workers.

As a result, the General Assembly set aside $39.7 million in the current budget for raises of $2 to $3 an hour for front-line workers and their supervisors, effective July 1. McConnell also has ordered that entry-level wages climb to $20 by 2024 to make Rhode Island competitive with neighboring states in what is a nationwide shortage of caregivers.

While the state is facing the prospect of hefty fines beginning as soon as November, BHDDH is seeking further study of the needs of adults with developmental disabilities.

Despite NESCSO’s detailed analysis and presentation of options for systems change, BHDDH reported to the court in July that “efforts are underway to draft an RFP (request for proposals) for a Systems Rate Review.

“The focus of this Rate Review will be to take an in-depth look at how services are funded in the Adult DD System to determine if the funding is adequate; if the appropriate services are being funded; and to look at new services categories,” the state’s report to McConnell said.

To read the DOJ’s proposed contempt order, click here.

To read the DOJ’s motion for contempt, click here.

To read the DOJ’s arguments for contempt, click here.

For charts supporting the DOJ’s arguments, click here.

RI House To Vote On Pay Hikes For RI DD Workers

UPDATE: On June 24, the House passed a $336.7 million developmental disabilities budget as recommended by the Finance Committee. It is part of an overall overall $13.1 billion spending package proposed for the fiscal year beginning July 1 that now goes to the Senate.

By Gina Macris

Rhode Island would add an estimated $2.53 an hour to entry-level pay for caregivers of adults with developmental disabilities in the proposed state budget that it is headed for a vote in the House Thursday, June 24. But it’s not clear if the wage hike will be enough to attract needed workers.

The proposed wage increase, from an estimated $13.18 to $15.75 an hour, resulted from months-long, court-ordered negotiations intended to develop a three-year plan to strengthen Rhode Island’s private developmental disability system so it will enable the state to comply with a 2014 civil rights consent decree.

The proposed wage package also includes a $3.58 hourly increase for supervisory personnel, from $18.41 to an estimated $21.99 an hour.

The House Finance Committee accepted the negotiated rates during a June 17 vote on the overall budget for the fiscal year beginning July 1. But it rejected Governor Dan McKee’s plan to privatize the state’s own parallel group home system, saying 50 state jobs that would have been eliminated should be restored to the state payroll.

In all, the state and privately-run developmental disabilities systems would get nearly $336.7 million in the fiscal year beginning July 1, an increase of roughly $32.7 million over the current budget of $304 million.

The privately-run system would get a total of $297.6 million, or about $37.2 million more than the current allocation of $260.4 million, according to figures from the Office of Management and Budget (OMB) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The higher total reflects the cost of the pay hikes, $39.7 million in federal-state Medicaid funding, including the redirection of $13 million of a $15 million “transition and transformation fund” the McKee had administration originally had proposed for court-ordered system reforms to comply with the consent decree.

Chief Judge John J. McConnell, Jr. of the U.S. District Court had ordered the state to come up with a three-year plan by June 30 that would spell out what it intends to do to comply with the consent decree by the end of the decade-long implementation period June 30, 2024.

In a recent report, an independent court monitor told the judge that the second and third years of the plan were not discussed during the recent negotiations, and he recommended that the state continue to meet with private service providers and others on a weekly basis to discuss unresolved issues.

In a recent hearing before the House Finance Committee’s Subcommittee on Human Services, the director of the Division of Developmental Disabilities, Kevin Savage, said the state has a “difficult” relationship with the federal court.

While providers have called the raises a significant step, they say they do not believe that the new rate of $15.75 will affect their worker shortage when Massachusetts and Connecticut are paying more.

On July 1, minimum wages in Connecticut will increase to $16.50 an hour for private-sector direct care workers in the first year of a two-year contract between that state and the Service Employees International Union (SEIU). The rate will jump to $17.25 on July 1, 2022.

Massachusetts will pay direct care workers at privately-run agencies a minimum of $16.10 an hour beginning July 1, the final year of a three-year contract with another branch of the SEIU, according to a salary schedule on a Massachusetts state website related to “personal care attendants.”

Tina Spears, executive director of the Community Provider Network of Rhode Island, has said in recent weeks that she has recommended data be collected on hiring and retention to enable the court to gauge whether the wage hikes help providers expand their workforce.

As it now stands, the private system lacks about 37 percent of the workforce it needs to support individuals in jobs and non-work activities in the community as required by the consent decree and the Integration Mandate of the Americans With Disabilities Act, according to a recent report made to the court.

In other changes, the House Finance Committee moved up by one year the date for including the developmental disabilities caseload in an important budget-planning exercise, the Caseload Estimating Conference. That means the change would take effect in 2021, instead of 2022.

Judge McConnell has ordered that the developmental disabilities caseload be part of the discussion at the Caseload Estimating Conference beginning November of this year to bring transparency and consistency to budgeting for these services.

House Finance recommended the Executive Office of Health and Human Services give assistance to the BHDDH to prepare the caseload data for presentation at the November conference.

The McKee administration never explained why it originally proposed that the change be made in 2022.

In another court-ordered reform, an OMB spokesman confirmed that the allocation for the privately-run system of services contains $6.8 million to fully fund annual authorizations that set an individual spending limit for each person receiving developmental disability services.

For the last decade, the authorizations have been available on a quarterly basis. Any amount not utilized within a particular three-month period cannot be carried over to the next quarter. And the fee-for-service reimbursement system now in place means that providers cannot bill for those who do not participate on a particular day, for whatever reason, even though the agencies may incur the same costs for staffing.

Providers and service recipients and their families alike say that annual funding will allow them greater flexibility in planning their programs.

RI House Finance Committee To Air Governor’s New Plan To Raise DD Wages

By Gina Macris

Rhode Island Governor Dan McKee has asked the General Assembly to fund hourly pay rates of $15.75 for frontline workers serving adults with developmental disabilities and $21.99 for supervisory personnel.

The House Finance Committee will hold a public hearing on the proposal Thursday, June 10, at the conclusion of the full session of the House, which is not set at a fixed time but usually occurs sometime after 5 p.m.

The budget amendment aims to offer competitive wages to direct care workers in compliance with a 2014 civil rights consent decree, according to a June 7 memo from Jonathan Womer, Director of the Office of Management and Budget, sent to the chairmen of the House and Senate finance committees.

The wage increases would cost a total of $26.7 million more in federal-state Medicaid funding than McKee had originally proposed for the privately-run developmental disability service system in the fiscal year beginning July 1 – nearly $7.8 million in additional state revenue, and almost  $19 million in federal reimbursements.  

McKee also would redirect $13 million in Medicaid funding to the wage package, including $9 million in state revenue and $4 million in federal funding. That means the entire wage package would cost a total of $39.7 million, with federal reimbursements accounting for well over half that figure. Entry-level workers in the privately-run system are now paid about $13.18 to $13.40 an hour, according to various providers.

The $13 million re-directed to wages would come from a $15 million “transition and transformation fund” for initiating systemic reforms to help the shift to integrated, community-based services required by the consent decree. McKee’s proposal would leave the innovation fund with $2 million. (A recent report of an independent monitor to the U.S. District Court recently criticized an earlier state plan that would have eliminated the innovation fund, putting all the $15 million into wages.)

In another matter aimed at consent decree compliance, the proposed budget amendment would move up the date for including the caseload of the privately-run system of developmental disabilities in the semi-annual Caseload Estimating Conference used by the executive and legislative branches of state government to plan state budgets.

The amendment would add these caseload numbers to deliberations beginning November, 2021, as ordered by the federal court, instead of November, 2022., as had been originally proposed by the McKee administration. The inclusion of the developmental disabilities caseload is intended to ensure predictable, consistent funding for these entitlement services funded by the Medicaid program, according to the court order.

Because of COVID-19 public health restrictions, the Finance Committee will not take testimony in person. Instead, it has established rules for those who wish to submit written testimony in advance or pre-register to be called on the phone to submit verbal testimony.

According to the agenda for Thursday’s hearing:

“The meeting will be televised live on Capitol Television, which can be seen on Cox Channels 15, and 61, in high definition on Cox Channel 1061, on Full Channel on Channel 15 and on Channel 34 by Verizon subscribers. It will also be live streamed at http://rilegislature.gov/CapTV/Pages/default.aspx

“WRITTEN TESTIMONY: Written testimony is strongly encouraged and may be submitted via HouseFinance@rilegislature.gov   Indicate your name, bill number, and viewpoint (for/against/neither) at top of message. Due to high volume, clerks are not screening this inbox for verbal testimony requests. This inbox is for written testimony only. DEADLINE: Written testimony should be submitted no later than three (3) hours prior to the posted meeting time. Every effort will be made to share written testimony submitted before the deadline with committee members prior to the hearing. Testimony received after deadline will be sent to committee members and posted to the website as soon as possible. For faster processing, it is recommended that testimony is submitted as a PDF file. Testimony will be posted on the General Assembly website, http://www.rilegislature.gov/Special/comdoc/Pages/HFIN.aspx

“VERBAL TESTIMONY: Due to the extremely high volume of requests, and in order to accommodate as many constituents as possible, please take note of the revised procedure for verbal testimony:

“DEADLINE: Requests for verbal testimony must be submitted via the link, by 4:00 PM on Wednesday, June 9, 2021. For verbal testimony requests, CLICK HERE  

“Verbal testimony accepted on any bill scheduled for "Hearing and/or Consideration" only The committee is unable to designate a specific time that you will be called. In the event you are unavailable when called, witnesses are urged to submit written testimony. Christopher O'Brien Committee Clerk 222-6916 HouseFinance@rilegislature.gov  “

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• shifting from quarterly to annual per-person budget authorizations

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

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

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

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

Additional recommendations include:

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

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

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

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

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

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

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

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

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

By Gina Macris

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

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

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

Dominic Ruggerio

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

The House used similar language in a separate letter.

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

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

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

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

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

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

Joseph Shekarchi

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

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

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

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

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

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

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

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

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

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

RI Faces High Cost For Fixing DD ADA Violations

By Gina Macris

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

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

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

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

Judge John J. McConnell, Jr.

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

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

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

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

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

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

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

Monitor’s Calculations More Limited In Scope

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

A. Anthony Antosh

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

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

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

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

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

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

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

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

Monitor’s Numbers “Illustrate” Solutions

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

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

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

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

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

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

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

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

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

COVID-19 Exacerbates Inequities

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

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

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

The crisis has been nine years in the making.

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

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

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

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

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

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

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

Read the court monitor’s report here.

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

RI: Life And Death In Split-Screen Reality

Cassiana Fuller at work

By Gina Macris

The statistics are grim: five deaths since April 1 attributed to COVID-19 in connection with group homes in Rhode Island, including four residents with developmental disabilities and one caregiver.

But stories from the developmental disability community are not all about vulnerability.

Some people with intellectual challenges and other developmental disabilities are nevertheless working on the front lines to help get food on people’s tables and keep congregate care facilities clean. Nikolas Simijis, for example, has made a conscious decision to work as a personal grocery shopper in Providence, despite the risks.

Cassiana Fuller recently took on a job in the housekeeping department at the Cherry Hill Manor And Rehabilitation Center in Johnston, undergoing special training in cleaning high-contact surfaces last month just as the coronavis started to hit Rhode Island. And a third worker, identified only as Michael, hasn’t missed a day on the job at Shaw’s supermarket in East Providence since he was hired last August.

Like the rest of the country, Rhode Island is living a split-screen reality, literally and figuratively. At the same time that Governor Gina Raimondo was giving one of her daily briefings this past week on illness, hospitalization, and death from a largely empty reception room at the State House, Nikolas Simijis, Cassiana Fuller, and Michael stood by at their separate workplaces, preparing for their own press conference on Zoom, the teleconferencing app.

The virtual event was sponsored by the Rhode Island chapter of the Association of People Supporting Employment First (RIAPSE) and the Rhode Island Developmental Disabilities Council “to show how people are affected by policies and legislation,” said Kevin Nerney, executive director of the Council.

The federal-state Medicaid program, which pays for employment-related supports that make it possible for Nikolas, Cassiana, and Michael to work, is “so much more” than medical funding, Nerney said.

“It allows people to live independent and meaningful lives and to be full citizens in their community,” Nerney said. (Medicaid also has waived some of its rules to give states greater flexibility in responding to the pandemic.)

The annual event, called “Take Your Legislator To Work Day,” drew U.S. Rep. David Cicilline, representatives of the other three members of Rhode Island’s Congressional delegation, who had to bow out to attend pandemic-related events, and several members of the Rhode Island General Assembly.

Adrienne Tipple of the Perspectives Corporation, who helps Nikolas at Whole Foods on Waterman Street in Providence, said the two of them had serious conversations about “what’s going on in the world, and he made an informed decision to be out here.”

NikolAS sIMIJIS wORKS aT wHOLE fOODS

Whole Foods provides a mask and gloves for Nikolas, who has his temperature taken every day when he gets to work, Tipple said. She is Manager of Youth Transitional Employment Services at Perspectives.

Nikolas uses an iPhone loaded with the software he needs to navigate the store to shop items on customers’ lists, bag them, and hand them off to a driver for delivery.

“Some people can’t come to the store. It would be a risk for them,” Cicilline said. “The work you are doing will help save people’s lives. Thank you for doing it,” he said.

Other legislators – State Reps. Joseph N. McNamara, D- Warwick; Terri Cortvriend, D-Portsmouth; and Katherine S. Kazarian, D-East Providence, as well as State Sen. Louis Di-Palma, D-Middletown, underscored that message.

At the Cherry Hill Nursing Home and Rehabilitation Center in Johnston, Cassiana’s supervisor, Kevin Carrier, praised her diligence and attention to detail, particularly the cleaning of high-contact surfaces like doorknobs and elevator buttons.

Cassiana, Nikolas and Michael all are young and healthy and live with their families. They don’t have any underlying medical conditions which might make other people with developmental disabilities more vulnerable to the virus, especially in congregate care settings.

With the peak in coronavirus cases still a week to ten days away in Rhode Island, according to the experts’ projections, the impact has started to hit the developmental disabilities community.

As of April 18, there have been 35 cases of COVID-19 in group homes for adults with developmental disabilities, while an additional 6 residents of group homes for behavioral health have tested positive. Seventeen group home residents have been hospitalized, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Two of the four deaths of group home residents occurred at different properties run by AccessPoint RI. BHDDH has been working with AccessPoint “throughout the crisis” to contain the virus, identifying relief staff, supplying AccessPoint’s emergency facility with beds and supplies and moving some residents to an alternate BHDDH group home, the spokesman said.

A total of 1180 people with developmental disabilities live in congregate care, but that is less than a third of the population receiving some type of service from BHDDH. The department is asking everone with developmental disabilities and their family members to check in if anyone in the household has tested positive. Details on the check-in, as well as information on other types of outreach, are in the department’s weekly developmental disability newsletter, which can be found by clicking here. The newsletter includes a correction from last week’s installment, saying that those who independently direct services for a loved one may hire a family member as a caregiver.

A widespread shortage of masks, gloves and other equipment in hospitals, nursing homes and other congregate care settings has been one of the issues Governor Raimondo has addressed repeatedly in her daily briefings as Rhode Island competes with other states and with the federal government to get the equipment it needs.

Unionized workers at the ARC of Blackstone Valley protested against a lack of protective equipment and inadequate pay with a caravan of cars outside the ARC of Blackstone Valley at, 500 Prospect St. in Pawtucket April 15.

The rate increase authorized by the state to private providers of developmental disability services pays for a $1 an hour raise, but providers, who have been hit hard financially by the pandemic, are nevertheless offering increases of $2 to $5 an hour for those working in group homes, according to Tina Spears, executive director of the Community Provider Network of Rhode Island.

RI "Demanding Dignity" Campaign Backs $15 Minimum Wage For DD Caregivers In Two Years

RI State Rep. Evan Shanley, D-WARWICK, Left, and George Nee, President of the RI AFL-CIO At the State House Library *** photos by anne Peters

By Gina Macris

Rhode Island State Senator Louis DiPalma and Rep. Evan Shanley say they are introducing companion bills that would set a minimum wage of $15 an hour in two years for those who provide services to adults with developmental disabilities.

The bills were announced at a Feb. 27 State House press conference, hosted by George Nee, president of the Rhode Island AFL-CIO, to kick off a union-backed campaign called “Demanding Dignity” to prioritize a living wage for caregivers in highly demanding jobs who are paid less than fast food workers or retail clerks.

Both Nee and DiPalma said there’s not a single legislator who doesn’t believe that direct care workers are underpaid and have been underpaid for years.

The bills would be costly – an estimated $25 million in state revenue over two years, according to DiPalma.

Nee said the “Demanding Dignity” campaign aims to make the $15 rate a priority for legislators.

The best way to accomplish that aim, Nee said, is to tell and retell the personal stories that convey the impact of the current wage structure on people’s lives.

For him, Nee said, the biggest take-away from the event was the story of Nancy Tumidajski, who works at the ARC of Blackstone Valley in Pawtucket. She said she was hired in 1991 at $10.25 an hour, then double the minimum wage. Today, 28 years later, she makes about two dollars more than that, she said.

By comparison, the minimum wage is currently $10.50 an hour. The average entry-level wage for direct care workers is $11.36 an hour, according to a trade association representing service providers.

Governor Gina Raimondo has proposed raises that would add about 44 cents an hour to workers’ paychecks at a total cost of $3 million in state revenue, that would be roughly doubled by the federal match in the Medicaid program.

L To R: Noelle Siravo, Nancy Tumidajski, Louis DiPalma

Tumidajski said her duties have included resuscitating a client who stopped breathing, performing the Heimlich maneuver – multiple times – on a client prone to choking, and last year, providing hospice care in clients’ own homes when a flu epidemic caused a widespread shortage of beds in the healthcare system. Everyone on her team volunteered for hospice duty, she said.

Noelle Siravo of Pawtucket, the mother of a 47 year-old man with significant disabilities, said he is able to live in an in-law apartment in her home only because of the “wonderful” people who provide him with skillful support and care.

“It’s a tremendous burden off my shoulders,” she said, but “the wages are insulting for what they do.”

In addition to everything else, Siravo said, direct care workers often spend some of their own money on the people they support, because many adults with developmental disabilities don’t have any families and still want an occasional treat.

Tumidajski said one in three workers at the ARC of Blackstone Valley leave their jobs in a year, and the agency has trouble recruiting replacements at pay that runs between $11 and $12 an hour. The ARC currently has 25 vacancies, she said.

The high turnover and vacancy rate threatens the quality of services and safety of clients, Tumidajski said. For the same work, Massachusetts already pays $15 an hour for direct care, and Connecticut has adopted a caregiver minimum wage of $14.75 an hour.

Jeff Perinetti, business representative for the International Association of Machinists and Aerospace Workers, the direct care workers his union represents took a 10 percent pay cut when Project Sustainability was enacted and have regained only six percent of it.

DiPalma said the meager wages paid to someone like Tumidajski are unconscionable.

The current rate model, introduced in 2011 with a $26 million budget cut, is built on the backs of workers, DiPalma said.

Established under the title “Project Sustainability, the fee-for-service model brought wholesale wage reductions without scaling back the state’s expectation for developmental disability services from private agencies or establishing a waiting list for services, he said. DiPalma, D-Middletown, is first of the Senate Finance Committee and chairs a special legislative commission that is studying the impact of Project Sustainability.

Shanley, D-Warwick, represents the Cowessett section of the city, which includes the Trudeau Center, one of about three dozen private providers of developmental disability services in Rhode Island and the place where his parents met as they cared for clients who had been stranded during the Blizzard of 1978,

The experience of helping others inspired his father, Paul Shanley, than 19, to become a police officer in Warwick, where he served 26 years, Shanley said. His mother, Mary Madden eventually became President of the Trudeau Center. She has recently been named interim director the Commuity Provider Network of Rhode Island, a trade association of private provider agencies. Both Shanley and DiPalma have previously filed legislation to increase wages for direct care workers.

Jeff Perinetti, business representative for the International Association of Machinists and Aerospace Workers, the direct care workers his union represents took a 10 percent pay cut when Project Sustainability was enacted and have regained only six percent of it.

in addition to the machinists’ union, the Demand Dignity campaign is backed by the Service Employees International Union, District 1199; the American Federation of Teachers and Health Professionals, and the United Nurses and Allied Professionals.

Nee set the tone for the event by invoking an enduring quotation from former Vice President Hubert Humphrey. Nee said that Humprey defined the “moral test of a government.” as the “way it treats those in the dawn of life, the children; those in the twilight of life, the elderly; and those in the shadows of life; the poor, the sick, and the disabled.”

“We have an opportunity, with this legislation and this campaign, to determine whether or not Rhode Island , our government, is going to be moving up to meeting that moral test of what government should be,” Nee said.

For too long, people working in the field of developmental disabilities have “too often been relegated to the shadows of our community and our government, and we’re here to say that that should not be happening any longer,” he said.