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.

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

Tri-State Human Service Coalition To Press For More Funding

Photo By Remi Walle/Unsplash

By Gina Macris

Non-profit agencies in Connecticut, Massachusetts, and Rhode Island will hold a virtual presentation for Monday, Dec. 6, asking legislators to fund solutions to a workforce crisis that has curtailed services to some of the region’s most vulnerable people.

Clients of the agencies include those with mental health and addiction issues, developmental disabilities, victims of domestic violence, and elderly persons trying to stay in their own homes.

The Community Provider Network of Rhode Island, The Providers’ Council of Massachusetts, and the Connecticut Community Nonprofit Alliance, representing a total of more than 500 human service agencies, have scheduled the two-hour presentation from 10 a.m. to noon on Monday. Pre-registration is at https://ctnonprofitalliance-org.zoom.us/webinar/register/WN_JJDc9bY9SXSAMHyuGOJCYA

The forum, open to the public, is aimed at policy makers and state legislators, said Tina Spears, executive director of CPNRI, a trade organization focused on services for adults with developmental disabilities.

“While workforce shortages across industries have been well documented, the shortage in the nonprofit sector has been amplified by historic underfunding,” the organizers say. (The Massachusetts legislature appears to be on the verge of passing a $4 billion human services package.)

In Rhode Island most recently, all nine early intervention providers have stopped taking new cases of families with infants and toddlers needing a variety of therapies to treat developmental delays. The children are entitled to these services by law.

Without an influx of money, early intervention and other types of human services “will continue to shrink,” increasing the odds that providers will shut their doors all together, Spears said in a telephone interview December 3.

In the areas of early intervention and children’s services, Rhode Island Governor Dan McKee proposed a budget amendment in October that would include $5.5 million for early intervention and $12.5 million for direct care staff of service providers for children in state care, with some of them languishing in hospital psychiatric programs because there are no beds for them in the community.

The state is being fined $1,000 each day that situation continues.

McKee’s proposal for early intervention and children in state care, part of a $113 million plan for using funds from the federal American Rescue Plan Act (ARPA), would have immediate effect if it passed the General Assembly.

In October, spokesmen for House Speaker Joseph Shekarchi and Senate President Dominick Ruggierio said they are “aware of the crisis and working with their colleagues and stakeholders. They are willing to consider solutions. “

Since then, the House Finance Committee has taken testimony on the workforce crisis, but the House leadership has signaled it will not meet before the regularly-scheduled session of the General Assembly in January.

Asked again whether the General Assembly might meet before the end of the year, the spokesmen for Shekarchi and Ruggierio said Dec. 3 in a statement to Developmental Disability News:

“The House and Senate Finance Committees are in the process of conducting a series of hearings on potential ARPA expenditures, including the Governor’s proposal and ideas from other groups. We are meeting regularly with Governor McKee, as recently as Wednesday, December 1. Our intent remains to act in the near future to address the immediate needs of Rhode Island residents and businesses.”

The category that has undergone perhaps the greatest scrutiny and analysis has been Rhode Island’s services for adults with developmental disabilities, the subject of a 2014 consent decree and multiple court orders intended to correct violations of the Americans With Disabilities Act by transforming a segregated system of care to one that is individualized and integrated in the communities of participants.

The federal oversight connected to the consent decree – which has now run seven years and nearly eight months – is due to expire in another two and a half years, on June 30, 2024.

And the U.S. Department of Justice has made it clear that a new system must be up and running smoothly for at least a year before it will sign off on compliance. That timeline, in effect, allows only 18 months, until July 1, 2023 for the transformation to be complete and full implementation to roll out without a hitch.

But so far, the state has not even put a dollar figure on the cost of such an overhaul.

Still, a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) says the department has every intention of complying with the 2024 deadline.

To avoid contempt of court – and hefty fines - the state laid out a wide-ranging action plan for compliance in October.

The first step is the selection of a consultant to review the rate structure for developmental disability services – expected by the end of the year, according to a BHDDH spokesman. The target date of Dec. 31 is two months beyond the Nov. 1 deadline the state set for itself, although BHDDH has told the court it is working in good faith with the state purchasing division to complete the task.

In the meantime, many adults with developmental disabilities have had their service hours reduced by half or more as the system has failed to recover from the pandemic lock-down of 2020. The consent decree requires 40 hours of service a week. Some service recipients are currently getting less than 10 hours.

After court-ordered negotiations between state officials and providers, the General Assembly raised the starting hourly wage for direct care workers from $13.18 to $15.75, effective July 1.

There has been no detailed analysis yet on the effect of the wage increase on the workforce. But Spears, the CPNRI director, said that anecdotally, the raise seems to have been most effective in persuading existing direct care personnel not to quit their jobs.

The raise seems to have had a modest impact effect in attracting new employees, but “nowhere near” the number needed to comply with the consent decree, she said.

In 2020, a consultant for providers calculated that the state needs to expand the direct care workforce by about 38 percent – to a total of 2845 - to implement the community-based system required by the consent decree.

BHDDH has proposed an $18 starting wage effective next July 1 in its budget request to McKee. By 2024, that rate must move up to $20 an hour, according to an order by Chief Judge John J. McConnell of the U.S. District Court.

With the higher wages, recruitment efforts are expected to emphasize training and professional standards for caregivers, who have complex responsibilities.

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.

Employers Advancing DD Worker Raises While State Updates Reimbursement System

By Gina Macris

Most providers of services for adults with developmental disabilities in Rhode Island have passed along wage increases enacted by the General Assembly for the fiscal year that began July 1, even though the state’s developmental disabilities agency has not yet programmed the higher rates into its reimbursement system.

The raises, negotiated between state officials and representatives of some three dozen private provider agencies under pressure from the U.S. District Court, increase hourly wages for direct care workers by more than $2, from about $13.18 to an estimated $15.75 per hour, depending on variations in payroll taxes and other employer costs related to employment.

The General Assembly approved hikes of well over $3 for supervisory personnel, from $18.41 to $21.99 an hour.

Providers who can afford it are “floating” the pay hikes to staff for a few weeks with the assurance that they will be reimbursed when the increases are fully implemented by the state’s Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said Tina Spears.

“Providers are desperate for staff,” said Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association representing about two dozen private agencies. The worker shortage, exacerbated by the pandemic, has increased employers’ overtime costs and forced many supervisors to provide direct care.

The General Assembly set aside $39.7 million in the BHDDH budget for the raises and “associated payroll costs,” which BHDDH says should put the “minimum” pay at $15.75 an hour for direct care workers and $21.99 an hour for supervisors.

But providers say the mathematical formula BHDDH uses to calculate the minimum pay doesn’t allow enough for the added payroll taxes employers must pay every time they hire a new staffer or give someone a raise.

Spears said providers are making every effort to pass on as much of the extra money as possible to their employees. Everyone should be making at least $15 an hour, she said.

In a newsletter last week, BHDDH officials encouraged those “self-directed” individuals or families managing a loved one’s individualized program to advance raises to the workers they hire even though their funding authorizations have not yet been adjusted to reflect higher rates. Self-directed individuals, who do not have overhead, pay more than the provider agencies but don’t offer benefits.

It’s not yet clear whether the pay hikes will be enough to cut into the workforce deficit, one of the reasons holding BHDDH back from implementing requirements of a 2014 consent decree mandating that adults with developmental disabilities be integrated in their communities.

Massachusetts and Connecticut both pay higher hourly rates than Rhode Island for similar jobs, one factor that is said to contribute to the state’s worker shortage.

A consultant has estimated that Rhode Island needs at least 1000 more individuals working with adults with developmental disabilities to implement the consent decree. The worker shortage is one of several reasons the Chief Judge of the U.S. District Court, John J. McConnell, Jr., has scheduled a week-long hearing in mid-October to gather evidence for holding the state in contempt for its failure to overhaul its developmental disabilities system as required by the consent decree.

"Significant" Raises Proposed For RI DD Workers After Court-Ordered Talks

By Gina Macris

RI Governor Dan McKee’s proposal to raise wages from $13.18 to $15.75 an hour for caregivers of adults with developmental disabilities might prevent a widespread worker shortage from getting worse.

But those who have had the frustrating experience trying to recruit and retain workers at the current lower rate told the House Finance Committee June 10 that the proposed raise, while significant, will not be enough to ease the labor crisis that prevents the state from complying with a 2014 civil rights consent decree affecting adults with developmental disabilities.

Other advocates made the broader statement that that paying a living wage to caregivers of all vulnerable populations is a moral imperative. Raising pay to attract more workers also is essential to guaranteeing the civil rights of vulnerable people, no matter what their disability, they said.

The Integration Mandate of the Americans With Disabilities Act, (ADA), reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, says that those with disabilities have a right to receive the services they need to live regular lives in their communities.

If the state does not adopt a comprehensive Olmstead plan to provide integrated, community-based services to all people with disabilities, it will remain vulnerable to more litigation like the ADA complaint of the U.S. Department of Justice (DOJ) which led to the 2014 consent decree, said a spokesman for the Rhode Island Developmental Disabilities Council.

As it is, Rhode Island’s Director of the Division of Developmental Disabilities acknowledged at the House Finance Committee hearing that the state has a “difficult relationship” with the U.S. District Court and the DOJ over the status of implementation and the unfinished work ahead as the agreement nears its conclusion in 2024.

I/DD Population Sitting At Home

Seven years after Rhode Island signed the consent decree, agreeing to end the segregation of sheltered workshops and day care centers, many adults with developmental disabilities are no better off.

For example, Jacob Cohen of North Kingstown, who once had a full schedule of activities in the community, now gets only three hours a week of support time, his father, Howard, told the Finance Committee in written testimony.

At AccessPoint RI, a Cranston-based service agency, 50 of 109 supervisory and direct care jobs are vacant and 60 out of 160 clients are not getting any daytime services, according to the executive director.

The consent decree calls for 40 hours a week of employment-related supports and other activities in the community.

A consultants’ report commissioned by providers says the private service providers lack 1,081 of the 2845 full time direct care workers they need to carry out the requirements of the consent decree. COVID-19 exacerbated the workforce shortage but did not cause it, the consultants said. The consultants said that depending on living arrangements, persons with developmental disabilities have experienced a reduction in services ranging from 49 percent to 71.6 percent, with those in family homes having the severest cutbacks.

The McKee administration’s proposed $15.75 hourly reimbursement rate would represent a wage hike of about $2.50 or more for direct care workers – roughly 20 percent.

The state does not set private-sector wages directly but reimburses the private agencies for wages and employment-related overhead, like taxes and workers compensation. Some providers pay a little more than the current hourly minimum of $13.18, by subsidizing wages with revenue from other types of services.

In addition to raising direct care worker pay, the proposal would raise reimbursement levels for supervisors’ wages from $18.41 to $21.99. There would be no raises for support coordinators or job developers, who are paid $21.47 an hour. Nor would those in a catch-all “professional” category receive a pay increase. They are paid $27.52 an hour, according to a presentation the House Fiscal Advisor made to the Finance Committee.

The overall wage increase would cost a total of $39.7 million in federal-state Medicaid funding, including $16.8 million in state revenue and $22.9 million in federal reimbursements.

Of the state’s share of the cost, $13 million would be re-directed from a $15 million “transition and transformation fund” for developing systemic reforms aimed at quality improvement and the reimbursement model that pays private providers. The reimbursement model was redesigned a decade ago to favor segregated care and has not been fundamentally changed since then.

Robert Marshall, the spokesman for the Rhode Island Developmental Disabilities Council, warned that gutting the so-called “transition and transformation fund” could heighten the state’s non-compliance with the consent decree and leave it open to additional federal action.

House Fiscal Office

With the governor’s proposed raises included, the allocation to the private developmental disabilities system would jump from $260.3 million in federal-state Medicaid funding in the current fiscal year to $297.7 million, an overall increase of $37.4 million, according to the presentation of the House Fiscal Officer, Sharon Reynolds Ferland.

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association which negotiated the wage hike with the state, called it a “notable first step in rebuilding the workforce serving people with intellectual and developmental disabilities.”

SPEARS CPNRI

“This wage increase will improve the lives of both those who do the work and the families who are served by that work,” she said in written testimony.

But Spears, who had pressed for a rate of $17.50 an hour, told the committee that the state’s final offer of $15.75 does not make it competitive in attracting new workers.

Complicating the salary issue, the administration expects the private agencies to accept group home residents from the state-run developmental disabilities system, which it plans to phase out. The current allocation of $29.7 million for state-run group homes, named Rhode Island Community Living and Supports (RICLAS) would be cut to $9 million in the next budget.

Both the unions representing RICLAS workers and the private providers have expressed skepticism that the privatization is feasible.

The budget calls for the reduction of 50 RICLAS positions. RICLAS pays workers a starting rate of about $18.55 an hour, more than $5 above the current entry-level pay in the private system, and about $2.80 above the proposed new private-pay rate.

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.”

Massachusetts already siphons off some of Rhode Island’s best caregivers, said Michael Andrade, President of CPNRI and CEO of Pro-Ability at the Bristol County ARC.

Ruggiero Capitol TV

During the hearing, Rep. Deborah Ruggiero asked Jonathan Womer, Director of the Office of Management and Budget (OMB), to tell her who has been leading the state’s response to the consent decree during the last few years and explain why there has been “so little progress.”

She also wanted to know why she’s hearing reports that the state is “not in very good standing” with the Court or the DOJ and what is being done to change that situation.

Womer introduced Kevin Savage, who has been in charge of the Division of Developmental Disabilities since last July.

“While we haven’t met a number of benchmarks for getting people to work” in the community, Savage said, “there are no longer any sheltered workshops in Rhode Island.”

SAVAGE

“That’s a major achievement of the consent decree,” Savage said. He added that because of the pandemic, meeting goals for employment and community integration has been “extremely challenging,”

During state budget preparations, which began last fall during great economic uncertainty, OMB asked state agencies to submit proposals with 15 percent reductions in their spending plans. The economic outlook has brightened considerably since then.

In January, Chief Judge John J. McConnell, Jr. of the U.S. District Court said Rhode Island must raise direct care wages to $20 an hour by 2024 to attract more direct care workers to Rhode Island providers, who do the work in the field necessary to enable the state to comply with the consent decree.

Two months later, in March, the governor submitted a budget proposal that offered no raises. Then came court-ordered negotiations, which resulted in the administration’s proposal for the $15.75 rate, as well as a separate budget amendment that would comply with another court order, making the developmental disabilities caseload part of formal, consensus-building state budget preparations in November of this year.

During the budget hearing, Savage said, “We are having a difficult time in our relationship with the Court. We do want to repair that.”

“We have tremendous respect for the judge and tremendous respect for the court monitor. We work with some of the best providers you can work with, so it’s really not a matter of not wanting to work with the providers or the court monitor,” Savage said.

The negotiations took too long, he acknowledged.

“We need to pick up the pieces and move forward faster,” he said, engaging the community “much more robustly than we have.”

“We need to get to get to $20 by 2024,” to “stabilize the workforce,” and make other reforms as part of a court ordered, comprehensive three-year compliance plan, he said.

Rep. Alex Marszalkowski, D- Cumberland, chairman of the Human Services Subcommittee of the House Finance Committee, asked why the wage increases would apply to group home workers when the consent decree is limited to issues related to daytime services.

Savage responded that “if we stabilize one part of the workforce, we destabilize the other; the only path is to stabilize the entire system.”

Emphasis on Civil Rights

Later in the hearing, Spears, the CPNRI director, emphasized that hard-working caregivers deserve a living wage and noted that “civil rights protections” are at the heart of the 2014 consent decree. “It’s essentially a corrective action plan to resolve civil rights violations and make sure they never happen again,” she said.

She added: “We are seven years into a ten-year agreement, and there is a tremendous amount of pressure from the Court and the U.S. Department of Justice to achieve the established benchmarks.” As it now stands, the private sector cannot deliver on the compliance the state needs, Spears said.

The Chair of the Long Term Care Coordinating Council (LTCCC) and the representative of the Developmental Disabilities Council each applied a broader perspective on the budget amendments, saying the General Assembly must address the workforce and quality-of-life issues across all vulnerable populations.

Maureen Maigret, chair of the LTCCC, recommended the General Assembly use some of the current Medicaid reimbursement rate, enhanced under provisions of the American Rescue Plan Act, to raise the wages of direct care workers funded by Medicaid’s Home and Community Based Services (HCBS) to the same level proposed for those working in developmental disabilities.

“The issues facing other types of home and community-based services and residential programs are similar to providers of services for persons with developmental disabilities,” Maigret said in written testimony, citing low wages, high turnover and staff burnout, all exacerbated by the pandemic.

“And we know that almost a majority of these workers are women and persons of color whose value has historically been under-valued,” Maigret said.

“Efforts to achieve wage parity for all direct care staff working in government-subsidized Home and Community-Based Services (HCBS) is imperative if the state is to have a quality and accessible LTSS (Long Term Services and Supports) system with appropriate options for persons needing care,” she said.

Marshall, of the DD Council, said Rhode Island could use some of the one-time stimulus funding under provisions of the American Rescue Plan Act to develop an Olmstead plan, a multi-year blueprint for conforming to requirements of the ADA’s Integration Mandate.

Only seven states — Rhode Island among them - still lack such a plan, he said.

Because of the Olmstead decision, Medicaid changed the rules of Home and Community-Based Services programs to help vulnerable persons live as independently as possible at home or in home-like settings.

Marshall said Rhode Island has been in violation of Medicaid’s regulations on home and community-based services since 2014 and is “vulnerable to yet another Department of Justice lawsuit or ineligibility for federal Medicaid match.”

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

By Gina Macris

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

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

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

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

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

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

COVID Exacerbated Worker Shortage

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

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

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

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

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

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

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

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

Will The Governor Amend Budget Plan?

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

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

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

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

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

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

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

McConnell Tightens The Reins

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

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

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

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

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

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

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

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

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

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

RI DD Budget Emphasizes Quality Improvement, But Services Remain Scarce

By Gina Macris

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

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

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

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

Daniel McKee

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

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

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

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

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

Kevin Savage

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

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

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

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

Judge McConnell

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

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

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

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

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

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

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

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

Tina Spears

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Vaccinations Accelerate For RI DD Group Homes

By Gina Macris

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

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

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

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

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

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

COVID-19 Vaccinations Begin At RI DD Group Homes

By Gina Macris

Rhode Islanders with developmental disabilities aged 65 and over and their group home caregivers are receiving the COVID-19 vaccine through the CVS/Walgreen partnership, according to a spokeswoman for the state Department of Health.

More than 300 group home residents and staff were vaccinated over the weekend of Jan. 16-17, said Tina Spears, a representative of private agencies who is coordinating information between the group home operators, DOH officials, and those involved directly in the vaccination process.

“We are hoping to scale up the number this week and every week thereafter,” she said Jan. 20. Spears is executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association. By Jan. 21, tentative plans were being formulated to expand vaccination in the coming days to include younger group home residents with underlying medical conditions, as well as their housemates and staff, Spears said.

The DOH spokeswoman said that all adults with developmental disabilities in congregate care are included in Phase 1 of the vaccination program, with those in the 65 and older age bracket in Phase 1.2 and those younger than 65 in Phase 1.4. The spokeswoman, Anna Tomasulo, could not say exactly when Phase 1.4 would begin, or when adults with developmental disabilities who have other living arrangements might be offered the vaccine.

New Language On Support Persons In Hospitals

In a separate health-related development, DOH has put in place a COVID-19 emergency regulation which says hospitals “shall not unreasonably deny entry to support persons of an individual with a disability as defined by the Americans With Disabilities Act of 1990.”

The regulation says hospitals must provide accommodations to patients with disabilities so that they may be accompanied by as many as two support persons who can facilitate communication with hospital staff and ensure equal access to treatment and informed consent. Notices about the regulations must be posted in English and a minimum of three other languages commonly used by patients and staff in conspicuous places in the hospitals, along with a DOH telephone number to call with concerns.

Disability Rights Rhode Island (DRRI) led a led a push for the new regulation, which previously had been expressed as a matter of policy and unevenly adopted by hospitals, resulting in dozens of complaints that continued throughout 2020.

Morna Murray, executive director of DRRI, said, “We hope this language will go a long way toward educating everyone about the rights of individuals with disabilities to access their own health care.That is what having an essential support person is all about.”

“We will be monitoring the situation and are cautiously hopeful that this more rigorous regulatory language will be consistently implemented,” Murray said in a statement.

Access to COVID-19 vaccine remains another hurdle for advocates of adults with developmental disabilities in Rhode Island and throughout the country.

The American Academy of Developmental Medicine and Dentistry (AADMD) and other organizations have cited research highlighting COVID risks for adults with developmental disabilities, who as a group tend to have a higher rate of underlying medical conditions than the general public and are less likely to be able to follow mask-wearing and personal hygiene guidelines.

In December, the federal Centers for Disease Control (CDC) put Down syndrome on the list of those who should be vaccinated. But the CDC also says that “most people with developmental or behavioral disorders are not naturally at higher risk for becoming infected with or having severe illness from COVID-19,” a statement highlighted by Tomasulo, the DOH spokeswoman.

She said that the federal Advisory Committee on Immunization Practices (ACIP) makes recommendations to the CDC for the entire nation, while Rhode Island’s Vaccine Advisory Subcommittee “reviews these recommendations and determines how best to apply them to Rhode Island’s unique demography.

She offered two links for comparing the CDC recommendations for vaccine prioritization and the DOH Phase 1 plan:

• For the CDC

• For DOH

Tomasulo continued: “We want all Rhode Islanders who want to be vaccinated to get vaccinated. However, our supply is limited. Our Phase 1 priorities are to ensure that our healthcare infrastructure is able to continue to respond to the COVID-19 pandemic, and to protect those most at risk in long-term care facilities. As supply allows, we move on to other priority populations.”

Within Phase 1, one group may start receiving the vaccine before a previous group is completed, depending on the vaccine supply and the resources to administer it, she said.

Advocates Call For Vaccination of High-Risk DD Population And Caregivers

By Gina Macris

While there is growing research that COVID-19 puts people with developmental disabilities at a higher risk for serious illness or death than virtually any other compromised group, Rhode Island’s disability rights advocates remain uncertain whether the state will follow through on intentions to include this population in the initial vaccination phase.

Since the pandemic hit Rhode Island last March, it has affected nearly 30 percent of adults with developmental disabilities living in group homes and an uncounted number of others with intellectual or developmental challenges living in other settings. A total of about 550 group home staff have tested positive for the virus.

On Dec. 28, the Centers for Disease Control (CDC) announced that it had added Down syndrome — one of the most common developmental disabilities — to the list of conditions that put people at risk from serious illness or death from COVID-19.

People with Down syndrome are at higher risk for early-onset dementia as well as congenital heart disease, obesity, gastrointestinal disorders, and other chronic medical conditions.

On Jan. 8, the chair of the Rhode Island Developmental Disabilities Nurses Association (RIDDNA), wrote to the state’s public health epidemiologist, as well as coordinators for vaccine distribution, seeking confirmation that Phase 1 vaccinations, now underway, will include adults with developmental disabilities and the nurses and direct care staff who work with them.

Others are also pressing for similar assurances from officials of the Department of Health (DOH), including the health department’s counterparts at the state Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH) and the Community Provider Network of Rhode Island (CPNRI), a trade association of private service agencies operating group homes and offering daytime services to adults with developmental disabilities.

Tina Spears, CPNRI’s executive director, said initial advice from DOH was that adults with developmental disabilities are to be prioritized for vaccination in the ongoing Phase 1 distribution.

At the same time, this population does not appear on the patient list of the CVS-Walgreen’s partnership assigned by DOH to handle long-term care vaccinations, Spears said.

She said state officials need to “step up” and make the Phase 1 designation explicit.

The DOH COVID-19 portal says Phase 1 includes “long-term care facility staff and residents” but does not specifically mention adults with developmental disabilities. As examples of long-term care settings, DOH lists “group homes for individuals primarily 65 and older, assisted living, (and) elderly housing with residential services.”

Spears, meanwhile, said that she considers anyone eligible for developmental disability services from BHDDH to be receiving long-term care, whether in a residential setting or during the day in the community.

Fournier, the chair of the nurses’ group, highlighted the conclusions of research that has shown adults with developmental disabilities have greater incidences of the same underlying chronic medical conditions that have already been recognized as risk factors in non-disabled adults. These underlying conditions include heart disease, diabetes, various cancers, and asthma, as well as obesity and seizure activity.

Fournier cited joint recommendations of the American Academy of Developmental Medicine and Dentistry (AADMD) and a coalition of more than a dozen nationwide disability rights organizations that vaccine programs prioritize adults with developmental disabilities and all those who care for them, whether paid caregivers or unpaid family members.

Those living and working in group homes and other congregate care settings should be considered at the same risk as patients and staffs of nursing homes, according to a joint position paper issued by the AADMD and the disability rights groups.

Several research studies analyzing COVID-19 cases indicate that that those with intellectual or developmental challenges are more likely to die from COVID-19 than most, if not all, risk groups. They include an case analysis of privately-insured COVID-19 patients completed in November ty the nonprofit FAIR Health in conjunction with the John Hopkins School of Medicine.

Only 10 states, none of them in New England, have explicitly prioritized adults with developmental disabilities in their vaccination programs, according to the American Network of Community Options and Resources (ANCOR).

In Rhode Island, Fournier’s letter to public health epidemiologist Genevieve Caron pointed out that home care nurses have been receiving the vaccine, but nurses who work with the developmental disabilities population also work in home settings and have not been identified as vaccine-eligible.  

DOH did not immediately respond to a request for comment.

As of Jan. 6, a total of 351 of 1,212 residents in congregate care had tested positive for COVID-19 since the counting began last spring, according to figures compiled by state officials and obtained by Developmental Disability News.

The virus has affected a total of 214 group homes – all but 77 facilities in the privately-run system under license from the state, according to these figures.

A total of 14 group home residents and staff members have died.

In November, BHDDH had reported 12 deaths, including 9 group home residents and 3 staff members, but more recently, BHDDH lawyers, through a spokesman, declined to say whether the two most recent deaths were staff members or residents, They cited patient privacy concerns.

In its most recent update on COVID -19 on Jan. 8, BHDDH officials acknowledged they have received many inquiries about vaccination from the developmental disabilities community.

In a statement, officials said:

“We believe that all at-risk individuals, providers, and staff should be vaccinated and we have strongly and repeatedly advocated for that – however it is a challenge with a very limited supply of vaccine at this time. We expect that as more pharmaceutical firms get their vaccines approved, the timetable will become more generous. As soon as vaccinations dates become available, we will make information available.”

A global vaccine tracker maintained by Bloomberg News shows that Rhode Island has administered 2.98 per 100 people, for a total of 32,000 injections, or 43.7 percent of the state’s total current supply of 72,000 units. The tracker shows that 1,798 persons have received a second dose.

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

John J. McConnell , Jr.

By Gina Macris

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

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

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

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

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

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

McConnell said he saw “two levels of crisis:”

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

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

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

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

Cooperative Solution Preferred

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

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

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

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

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

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

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

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

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

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

Effects Of Pandemic “Unrelenting”

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

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

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

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

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

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

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

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

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

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

Spears Highlights Below-Market Funding

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

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

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

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

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

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

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

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

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

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

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

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

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

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

McConnell replied to Jones:

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

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

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

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

New Olmstead Consent Decree Coordinator To Guide Court-Ordered ADA Compliance in RI

By Gina Macris

Rhode Island is looking for someone to coordinate its compliance with a 2014 federal civil rights agreement affecting adults with developmental disabilities – for the sixth time in as many years.

The state created the position of Consent Decree Coordinator at the insistence of an independent court monitor who wanted someone with the clout to break through the “silos” of three departments of state government and hammer out an integrated response to the compliance steps in the agreement.

Since the spring of 2019, the position has been filled by Brian Gosselin, the Deputy Secretary of the Executive Office of Health and Human Services and its former Chief Strategy Officer.

Brian Gosselin

His tenure has been marked by controversy that has included a dispute – or misunderstanding, as Gosselin put it- over the independence of a community organization which was settled only by a letter from the U.S. Department of Justice.

Members of the community organization, the Employment First Task Force, have more recently described Gosselin’s consent decree work as “invisible.”

Now the state is under a court-ordered timeline to implement sweeping changes and it has decided to seek an independent contractor, reporting to Claire Richards, Governor Gina Raimondo’s Executive Counsel, to become the consent decree coordinator.

Louis DiPalma

The move won kudos from State Sen. Louis DiPalma, D-Middletown, the General Assembly’s most prominent watchdog on services for adults with developmental disabilities.

“I applaud the state, specifically Governor Raimondo, for elevating the position, by having the CDC (consent decree coordinator) report directly to her office, independent of any state agency,” DiPalma said in a statement.

However, Kerri White, Director of Public Affairs for EOHHS, said that the new consent decree coordinator will not be the first to report to the Governor’s Executive Counsel.

“The new Consent Decree Coordinator will continue to work with the established EOHHS, BHDDH, DHS and RIDE team but will have an avenue of escalation through the Governor’s Executive Counsel in order to maintain the compliance momentum achieved through the previous Consent Decree Coordinator,” White said in a statement.

She referred to the agencies involved in the state’s combined consent decree response, including the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the Department of Human Services (DHS), and the Rhode Island Department of Education (RIDE), as well as the Executive Office of Health and Human Services, which supervisory authority over BHDDH and DHS.

White said both Gosselin and the first coordinator, Andrew McQuaide, have reported to Claire Richards.

Midway through McQuaide’s tenure, his position in the bureaucratic heirarchy was lowered, when he was transferred to BHDDH. Three successive coordinators, Mary Madden, Dianne Curran, and Tina Spears, all worked from EOHHS.

Madden, who succeeded McQuaide, and Curran, who followed Madden, both had “substantial interaction” with Claire Richards, White said. Spears succeeded Curran. Gosselin, who by that time had twice served as interim coordinator, took over from Spears.

The appointment of Gosselin as coordinator in 2019 sparked criticism in the community, most notably from DiPalma, who said the choice of a salaried employee with loyalties to the state posed a conflict of interest.

“If you’re working for the state, I don’t know how you work for the 4,000 people” the consent decree seeks to protect, DiPalma said.

At the time, an EOHHS spokesman said Gosselin would bring “stability” to the coordinator’s job, and the state’s principal lawyer for the consent decree case said it was immaterial, legally, whether the consent decree coordinator was a state employee or an independent contractor.

DiPalma agreed that stability was critical but said “no rationale has been given for why we have had five coordinators in the last five years.”

Later in 2019, members of the Employment First Task Force, a community-based advisory organization created by the consent decree as a bridge between the public and government, told the DOJ about a disagreement with Gosselin.

They said Gosselin had attempted to curb the group’s contacts with the DOJ unless a particular outreach attempt had state approval. The matter escalated, until the DOJ sent a letter to the state’s lawyers that clearly underscored the independence of the Task Force.

DOJ lawyers said they hoped the situation was indeed a misunderstanding, as asserted by the state. The letter went on to say that members of the Task Force are “independent stakeholders with a role in the successful implementation of the consent decree.”

“Indeed, any limitation on open communication would undermine the intended autonomy of the Task Force,” the DOJ letter said.

Until a few days ago, Nov. 17, it was not clear that the state was, in fact, looking for a new consent decree coordinator to succeed Gosselin.

Earlier in November, a BHDDH spokesman said that the state had not advertised for a consent decree coordinator but had sent out a posting to state-contracted temporary staffing agencies for “temporary project management support” to “help organize our pathway to 2024”. That is the year the consent decree is scheduled to expire, assuming full compliance is achieved. The opening was advertised from Oct. 19 to Nov. 9, a BHDDH spokesman said.

“The State recognizes and appreciates Brian Gosselin’s great work on the consent decree and the many other projects that he oversees in his role as Deputy Secretary & Chief Operating Officer for the Executive Office of Health and Human Services,” said the BHDDH spokesman, Randal Edgar.

“Our team structure will remain in place and our key points of contact for the Court Monitor and the Community will remain unchanged,” he said.

“The State team values all of the stakeholder partnerships and recognizes the need for responsiveness to stakeholder concerns,” Edgar said.

The project management job description appeared to be very similar, if not identical, to that of the consent decree coordinator.

After requests for clarification from Developmental Disability News, White, the EOHHS spokeswoman, said that to eliminate any confusion, the state planned to re-post the position with the title of Consent Decree Coordinator.

“Since we are using a staffing agency to hire the Coordinator, we were limited to a prescribed list of job titles from the third-party staffing search agency. We understand this has caused confusion,” White said in an email.

White said the staffing agency that provides the successful candidate will pay the new consent decree coordinator and then bill the state. The budget for the consent decree coordinator is $100,000 a year. That allocation has not been used since Gosselin was appointed consent decree coordinator. Gosselin makes $146,655 as deputy secretary of EOHHS, according to state payroll data.

He will remain in the coordinator’s post during the transition, White said.

Federal Judge Orders RI To Re-Invent DD System

By Gina Macris

Judge McConnell

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

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

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

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

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

A Personal Story

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

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

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

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

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

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

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

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

Four-Week Deadline

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

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

Providers On Shaky Footing

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

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

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

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

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

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

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

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

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

Spears’ letter also requested

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

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

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

State Agencies Report On Efforts

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

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

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

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

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

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

Judge Finalizes Order

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

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

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

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

• limits access to already-approved individual budgets

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

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

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

Racism Compounds Stresses of COVID-19, Say RI DD Community Voices

Iraida Williams

By Gina Macris

(This article was updated June 9 )

A Rhode Island man with developmental disabilities, stuck at home since the start of the COVID-19 pandemic, is anxious to get back to his regular activities but also is “afraid to take out the trash because he’s black,’’ his mother told a virtual crowd of about 170 people June 5.

Iraida Williams, the man’s mother, spoke during a Zoom forum co-sponsored by the state Executive Office of Health and Human Services (EOHHS) and the Rhode Island Parent Information Network to discuss the hopes and fears of those involved with the developmental disability services. 

Marti Rosenberg

Marti Rosenberg, the moderator or the forum, replied that “just this morning,  EOHHS  has been grappling with these concerns.”

Rosenberg, director of Policy, Planning and Research at EOHHS, said the leadership wants to make sure that “EOHHS agencies are specifically having those difficult conversations.

 “We need to make sure we have an absolutely specific answer for your son,” she told Williams.

Williams said, “I look forward to hearing back from somebody.”

Until now, quarterly community forums on developmental disabilities have been run by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

But in choosing Rosenberg to moderate Friday’s event, EOHHS signaled a desire to bring the particular concerns of those facing intellectual and developmental challenges to the highest levels of the executive branch of state government.

On June 9, a BHDDH spokesman offered additional context, saying that EOHHS has been helping its member agencies with planning throughout the COVID crisis. Rosenberg had facilitated a number of reopening planning conversations with providers and other community members in partnership with BHDDH and DCYF, and the June 5 Zoom meeting was another in that series.

The meeting was almost entirely given over to participants and their ideas for re-opening regular services. But echoes of ongoing protests against racism in Providence and across the nation were never far from the surface.

Kelly Donovan

Kelly Donovan, who receives state-funded services and is a vocal advocate for herself and her peers, said “people are either antsy to resume their lives or afraid of going out.” In the chat box that accompanied the audio and video of the Zoom meeting, she said she herself is “worried about getting sick and equally worried about the United States turning into a dictatorship.”

Ken Renault of the advocacy group RI FORCE said he had concerns about the neglect or abuse of people with disabilities because of the stresses of the last few months.

Rosenberg said group home residents of color and workers of color have been experiencing even more stresses because of the massive attention to police brutality that has been the focus of widespread protests organized on the heels of the pandemic lockdown.

The COVID_19 pandemic has highlighted the difference between the haves and the have-nots and, and it’s time to recognize the institutional racism in the dividing line between them, said Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council.

“Yes,” wrote Donovan in the chat box that accompanied the video. “Institutionalized racism is a problem. It is rampant!”

Separately, Nerney and the leaders of Disability Rights Rhode Island and the Sherlock Center on Disabilities at Rhode Island College released a statement decrying the death of George Floyd in police custody in Minneapolis May 25, calling it murder.

“The RI DD Network stands on the side of those who are protesting another needless death, who reject hate, and who demand justice. We are committed to effectuating full inclusion in society and working for the civil and human rights of Rhode Islanders with disabilities of all races, cultural backgrounds and ethnicities,” the statement said. It was issued by Morna Murray of DRRI and Amy Grattan of the Sherlock Center, in addition to Nerney.

Kevin Nerney

During the meeting, Nerney said people with resources have weathered the statewide lockdown with few problems, but the have-nots have struggled.

COVID-19 can be a “springboard for systems change going forward,” Nerney said.

Tina Spears, executive director of the Community Provider Network of Rhode Island, asked what day services might look like as the state re-opens.

“People won’t be able to congregate in the same ways they did before the pandemic hit,” Spears said. It will be “challenging for all of us. How can we administratively and financially do this?”

Thirty percent of daytime services occur in group activities in day centers, according to the independent federal court monitor overseeing the state’s efforts to integrate adults with developmental disabilities in their communities. The monitor, A. Anthony Antosh, has asked that center-based care be eliminated when daytime services resume on a broad scale.

That move would inherently increase costs for providing services because supporting people in the community individually or in small groups is more labor-intensive than overseeing them all in one facility.

(Some agencies are able to provide limited one-on-one or small group services in the community during the pandemic, depending on individual circomstances.)

Nerney said that in an improved system of services, the consumer “has to have full control of planning, evaluation and budget, with assistance from trusted people.”

And the system must move away from congregate care while still giving people a full array of supports, he said.

That last comment sparked push-back from some parents, who said there will always be a need for group homes.

Kevin Savage, the director of the Division of Developmental Disabilities, addressed the issue:

Kevin Savage

“If we say we need congregate care, we can’t imagine providing services another way, in-home or living independently,” he said.

“The ultimate goal is people making their own choices,” he said. While the state closed its institution for people with developmental disabilities more than 20 years ago, if people are living in group homes with others not of their own choice, the de-institutionalization is not complete, Savage said.

Since 1994, when the Ladd School closed,  Rhode Island has supported relatively few housing options for adults with developmental disabilities. And housing is a primary concern, particularly for aging parents.

Savage did not address the cost of safe and supportive alternatives to group homes. For example, staffing an apartment with two or three residents 24 hours a day is inherently more costly than providing that coverage in a group home setting with four to eight residents.

Claire Rosenbaum, coordinator of adult supports at the Sherlock Center, said during the Zoom meeting that many people with intellectual or developmental disabilities may experience some depression as a result of the continuing isolation and may need mental health supports built into their services.

Other comments touched on a need to enable adults with developmental disabilities to have easy access to technology. Rory Carmody of AccessPoint RI and Casey Gartland of Perspectives explained how they used remote audio and video and other hi-tech capabilities to continue to place and support some clients in jobs during the pandemic and to conduct other activities.

John Susa, a parent and long-time advocate, said the Division of Developmental Disabilities has relaxed “a lot of unnecessary rules” during the pandemic. He said he would like the state to ”keep as many of those relaxations in place” as possible.

Carolyn Maxwell, who directs her daughter’s services, said she is particularly pleased about a rule change that allows her to receive compensation for the work she does with her daughter, Emily.

Maxwell, a teacher, said at the previous community forum in March that she was never able to return to the classroom after Emily was born 27 years ago. At the same time, she has had difficulty finding paid staff to work with her.

Maxwell has helped Emily start an online business called “Love Letters By Emily” that features handmade note cards and art photography incorporating American Sign Language, which Emily uses in daily life.

Speaking via Zoom last Friday, Maxwell said that being compensated as Emily’s caregiver has been a “huge help to us.” She wants the rule change to become permanent.

Savage, the state’s developmental disabilities director, said in mid-May that the relaxed rules on hiring legal guardians and other family members would remain in effect. Savage made the comment during a federal court hearing in mid-May on the way adults with developmental disabilities have fared during the pandemic, in conjunction with a 2014 consent decree that gives the court jurisdiction over state-funded daytime services.

Addressing procedures for re-opening developmental disability services, state officials said they anticipated guidelines for ending the lockdown at group homes to be issued later in the day on June 5. The guidelines were issued June 6. To read them, click here.

Service providers are expected to use the guidelines to develop a plan for re-opening group homes to family visits and other normal comings and goings, said Rosenbaum, the adult supports coordinator at the Sherlock Center. Plans must get approval from the BHDDH before they are implemented. (An earlier version of this article incorrectly said approval must come from the Department of Health.)

Rosenberg said the first set of guidelines will apply only to group homes. A separate second set of guidelines will be issued for day services, she said.

The resumption of day services would follow the same sequence, with the issuance of guidelines for providers to draft plans specific to their agencies.

Photos of themselves courtesy of Iraida Williams and Marti Rosenberg. All other photos by Anne Peters.

COVID-19 Claims 3 More Lives in RI DD Group Homes; Advocates Press For Justice

By Gina Macris

As the death toll from the coronavirus has ticked up in Rhode Island group homes for adults with developmental disabilities during the last two weeks, two community organizations have turned their focus to the multiple aspects of social justice - in health care equity and in issues of race.

As of June 3, a total of 10 group home residents have died from COVID-19, or 3 more than were reported about two weeks ago, on May 19, according to a spokesman for the state Department of Behavioral healthcare, Developmental Disabilities and Hospitals (BHDDH,)

Those who have died are included in a count of 138 persons with developmental disabilities in congregate care who have tested positive for the disease. The total represents an increase of 16 cases since May 19, according to figures provided by the spokesman.

Of all those who have become ill, 17 persons have been sick enough to be hospitalized at one point or another, the BHDDH spokesman said.

While the incidence of coronavirus is on the wane in Rhode Island, Disability Rights Rhode Island (DRRI) has been scrutinizing what it says are discriminatory state health care guidelines which could still be used in the future to ration care if the hospital system becomes overwhelmed.

A spokesman for the Rhode Island Department of Health said DRRI and several disability-related partner organizations have provided “important feedback” that will be considered as health officials move forward.

The developmental disabilities community has been preoccupied in the last few months with issues of equity in access to protective equipment and health care resources for vulnerable people, but ongoing concerns about civil rights should be put in a broader context in which racism permeates, said Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI).

Spears and Michael Andrade, President of the CPNRI Board of Directors, issued a statement June 2 saying that CPNRI “stands in solidarity with the people and communities in our state and across the country who continue to bear the physical, emotional, and economic effects of racism” - including people of color who belong to the direct care workforce and families supported by CPNRI.

The statement was prompted by the death of George Floyd, a 46 year-old black man who suffered a heart attack May 25 after a Minneapolis police officer put his knee to the man’s neck for nearly nine minutes. Floyd’s death has roiled the nation, from protests in the streets to politics at the highest levels in Washington.

“We speak out against the historical and current violence against Black, brown, and other members of marginalized communities,” Spears and Andrade said. “As a network, we remain committed to upholding social justice and dismantling systems of oppression and discrimination that further violence and neglect,” the pair said, pledging to work with other like-minded groups throughout the state and the nation to “combat the root causes and outcomes of racism.”

Meanwhile, Disability Rights Rhode Island (DRRI) has recommended changes to eliminate what it says are inherently discriminatory provisions in recent guidelines issued by the state Department of Health that could be used in allocating health care resources.

DRRI acknowledges that the discussion remains theoretical – for now – as hospitals have not exceeded their capacities and emergency facilities set up to deal with an overload of coronavirus patients have remained unused.

In a May 19 letter to the Director of Health, Nicole Alexander-Scott, MD MPH, DRRI and other partner organizations have said the “Crisis Standards of Care”, issued April 25, leave the door open for discrimination against those with disabilities and older Rhode Islanders by allowing health care officials to make subjective decisions about patients’ long-range survival or quality of life after discharge.

In response to a query from Developmental Disability News, a DOH spokesman said the department has “a commitment to ensuring equitable and just access to care for all Rhode Islanders, especially more vulnerable populations.

“We worked hard to try to have that commitment reflected in the document that was developed. Having said that, this is important feedback that we are going to consider internally as we look forward and think about ways that we can better ensure health equity for everyone throughout the state,” said the spokesman.

DRRI noted that Rhode Island’s principle for ensuring equity in access to healthcare “acknowledges the need for transparent criteria for allocating resources that are free from influence by inappropriate factors such as race, gender, socioeconomic status or sexual identity.” But the letter said that “disability and age” are missing from the list of inappropriate factors. This omission “appears intentional,” since the triage assessments and criteria described in the guidelines authorize “explicit and implicit” consideration of age and disability in excluding patients from access to scarce resources.

Among other things, the guidelines allow hospitals to screen out patients having a “medical condition associated with a short life expectancy” from access to critical healthcare resources, DRRI said. “Because ‘short life-expectancy’ is not defined, hospitals and clinicians are free to interpret the term and make subjective judgments regarding its meaning,” the letter said.

Many people who are aging or have disabilities also experience medical conditions that can be perceived as shortening life expectancy, and are at higher risk for being excluded from consideration based on clinicians’ subjective decisions, the letter said.

Although the guidelines take into account some conditions which are accommodated during the triage process, they fail to recognize pre-existing impairments such as limitations in mobility or speech, which would have an effect on an assessment of traumatic brain injury, DRRI said.

Nor do the guidelines mention federal laws applying to hospitals that prohibit discrimination on the basis of disability and require hospitals to make reasonable modifications to policies and practices to allow persons with disabilities to benefit from the services provided.

In a detailed analysis of the DOH guidelines, DRRI described the pertinent sections of federal anti-discrimination laws: Title II of the Americans With Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 1557 of the Patient Protection and Affordable Care Act (ACA.)

DRRI recommended revising the Crisis Standards of Care to comply with civil rights laws by eliminating criteria linked to survival beyond the illness which prompted the hospitalization at hand and by requiring hospitals to make accommodations for disabilities, like limitations in mobility and communications skills.

It also recommended that DOH broaden the grounds for appeal of triage decisions to include discrimination on the grounds of disability. The current grounds for appeal, permitted only for technical or procedural injustices, are overly narrow, DRRI said. To read the letter in its entirety, click here.

The letter was signed by Morna Murray, executive director of DRRI, as well as Steven Brown, executive director of the American Civil Liberties Union in Rhode Island; Amy Grattan, executive director of the Paul V. Sherlock Center on Disabilities at Rhode Island College; Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, Advocates in Action; Joanna Scocchi, director of the ARC Rhode Island Family Advocacy Network; Debra L. Sharpe, executive director of the Brain Injiury Association of Rhode Island; Spears, the CPNRI director, Marc Anthony Gallucci, executive director of the Ocean State Center for Independent Living; and Kim M. Einloth and Kiernan O’Donnell, co-chairs of the Rhode Island Employment First Task Force.

Hazard Pay For RI DD Workers On Its Way

By Gina Macris

Private employers of congregate care workers – including those in group homes for adults with developmental disabilities - began applying April 28 for COVID-19 hazard pay that could be in the paychecks of their employees as early as next week.

Over the weekend, Governor Gina Raimondo announced the Congregate Care Workforce Stabilization Fund to temporarily add stipends of $100 to $200 a week to the pay of front-line workers in nursing homes and group homes making less than $20 an hour.

“She heard. She listened and she acted,” said State Sen. Louis DiPalma, D-Middletown, who for weeks has been pushing for hazard pay along with the workers themselves, their unions, and their employers.

“It’s a great step,” he said, although “something that needed to be done before now” to incentivize low-paid workers to remain at their jobs while the coronavirus pandemic sweeps through the state.

He said he hopes the four-week pay boost, which kicks in May 4, will have the effect of curbing community spread of COVID-19 by discouraging group home workers from going to second jobs many of them need to make ends meet.

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), said “we have been desperate to get support for our workers.”

The announcement of the workforce stabilization fund was “positive and welcome news,” Spears said. Asked whether the money would be enough, she said “nobody would say more wouldn’t be appreciated.”

Employers may apply for the 100 percent forgivable loans on the website of the state Executive Office of Health and Human Services, which is linked here.

The state urges employers to complete their applications by May 2 and “will make every effort” to deliver the lump sum payments next week, by May 6, according to the EOHHS website.

Employees making less than $20 an hour may be awarded the temporary pay hikes for four weeks, through June 1, according to the following schedule posted in the “program guidance” on the EOHHS website:

• Those who work 30 hours a week or more may receive an extra $200 per week.

• Those who work from 22 to 29 hours per week may receive $150 extra per week.

• Those who work from fifteen (15) to 21 hours per week may receive $100 more per week.

The forgiveness on the loans depends on audits showing the payments were used as intended, entirely for temporary salary hikes to eligible workers.

The average pay for a direct care worker in a privately-run group home for adults with developmental disabilities is about $13.18 an hour, according to CPNRI, a trade association of about two thirds of the three dozen private developmental disability service organizations operating in the state.

In March, CPNRI asked for a $4.55 hourly raise for direct care workers, or an average total of $17.73 an hour – still about a dollar less than the starting hourly wage of those who work in state-run group homes for adults with developmental disabilities. Members of the Service Employees International Union protested the pay earlier this month at one privately-run group home and received a $7 hourly raise.

The Congregate Care Workforce Stabilization Fund announced by Raimondo comes from the CARES Act, the emergency aid relief package of more than $2 trillion enacted by Congress in March.

Because the overwhelming majority of deaths from the coronavirus have occurred in nursing homes and other congregate care settings, the “next step” is taking mobile testing to those facilities in order to map the spread of the virus and inform better ways of containing it, DiPalma said.

Of the 1180 persons with developmental disabilities in group homes, there were 63 individuals testing positive for COVID 19 who have not been hospitalized as of April 27, according to a spokesman for the state Department of Behavioral Healthcare Developmental Disabilities and Hospitals (BHDDH). An additional 17 persons who have tested positive have been hospitalized, and there have been a total of five deaths, including four residents and one staffer, according to the BHDDH spokesman.

In a recent survey, families said their top concern was that a loved one with developmental disabilities might be hospitalized and unable to understand what was going on around them without a familiar caregiver, who could both help health care workers with communications and reassure and assist the patient.

The survey was conducted by a coalition of several advocacy organizations: RI FORCE (RI Families Organized for Reform Change and Empowerment), PLAN RI (Personal Lifetime Advocacy Networks), The ARC Family Advocacy Network, RI Developmental Disabilities Council, RIPIN (Rhode Island Parent Information Network), and the Paul V. Sherlock Center on Disabilities.

The coalition would like to see the governor and the Department of Health issue an order to hospitals to permit patients to have companions in cases in which there are challenges to effective communications and informed consent to care, according to a spokeswoman.

Spears, the CPNRI director, acknowledged that families are having difficulty getting support and information during the COVID-19 crisis.

She said that she is concerned not only with the human and financial resources necessary to get her provider network through the immediate crisis but with “creating some level of normalcy” for support of individuals in the future.

“There’s not an end in sight for us,” she said. “We will need an unprecedented level of support” for the developmental disabilities community “for some time.”

COVID-19 Hits DD Group Homes In RI

By Gina Macris

A total of 23 adults with developmental disabilities in Rhode Island group homes — not quite 2 percent of all the 1180 adult residents in congregate care in the state — have tested positive for the coronavirus, as of April 9.

All but four of the residents live in homes run by private service providers licensed by the state. The four exceptions live in group homes of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), a departmental spokesman said April 9. He said eight BHDDH employees also have tested positive.

Of the 23 group home residents with confirmed cases, 9 were hospitalized the morning of April 10, the BHDDH spokesman said. The hospitalizations represent about 39 percent of all adults with developmental disabilities in congregate care who have become ill with COVID-19. That figure is more than four times the 9 percent of the coronavirus-positive population statewide that has required hospitalization, according to figures released by the office of Governor Gina Raimondo April 9.

Tina Spears, executive director of the Communitiy Provider Network of Rhode Island (CPNRI), said the proportion of hospitalizations among residents underscores the general vulnerability of the developmental disabilities population, although she added that she has not heard that any of those hospitalized are in critical condition.

The BHDDH spokesman, Randal Edgar, said: “Many DD group home residents are older and have medical conditions that make them more vulnerable to the COVID-19 pandemic. BHDDH is very concerned about their wellbeing and that is why we are working around the clock to do everything we can to provide care and monitoring and make sure they receive any medical services that are needed.”

Among support staff in the private sector, no more than two dozen have tested positive, but that figure is likely to change from day to day, Spears said April 10.

More than half of the two dozen provider agencies belonging to CPNRI, a trade association, have no infections among staff or participants, she said.

So far, providers are coping, Spears said, but more specific planning is needed to shore up the resources of the private agencies, which are stretched thin in normal times.

State Sen. Louis DiPalma, D-Middletown, said the state needs a formal Emergency Response Plan to address the care of individuals with developmental disabilities who become ill. He said he is trying to organize a collaborative effort to drawing up such a plan.

Among the unanswered questions: What happens in a surge of cases among group home residents, if too many staff also become ill and are unable to care for them?

All agencies have adopted aggressive cleaning protocols – sometimes as frequent as every four hours – and other strict precautionary measures, like body temperature checks, in cases where individuals are particularly vulnerable, but the providers are primarily acting on their own initiatives rather than as part of an official directive.

Efforts are made to quarantine group home residents who have tested positive and those who may have come into contact with the virus but have not been tested. In addition to stepped-up cleaning protocols, group home operators control traffic patterns within a facility and assign only designated staffers to the individuals under quarantine and those who have tested positive.

Staffers who may have come into contact with someone who has tested positive outside of their work assignment rare instructed to self-quarantine at home for two weeks.

On April 7, the office of Governor Gina Raimondo announced a 10 percent increase in developmental disability reimbursement rates for residential services. The rate increase, retroactive to April 1, is set to expire June 30.

The rate increase “recognizes the additional costs organizations are facing related to the COVID-19 crisis,” according Edgar, the spokesman for BHDDH.

“The Governor, EOHHS (the Executive Office of Health and Human Services) and BHDDH are committed to meeting the needs of our state’s most vulnerable residents and supporting our providers,” Edgar said in a statement.

“Our intention is to help provide stability to our state’s DD (developmental disability) providers through this rate increase as well as the recent “retainer payments” (advance funding) which went into effect last week,” the statement said.

Spears, however, said the rate increases apply only to a small portion of the rate structure, while the crisis has had an impact on all operations, including daytime programming, and has resulted in unprecedented costs that threaten the viability of the private provider system.

For example, some agencies have had to offer double-time pay to incentivize employees to work in group homes where there has been an infection.

“There’s no way” they will get coverage if staff are “not incentivized to take the risk,” she said.

But state officials “are working with us at this point,” Spears said. “We’ll take them at their word,” she said.

For weekly updates on COVID-19 from BHDDH, sign up for the newsletter of the Division of Developmental Disabilities by clicking here.