RI House Finance: Big Bucks for DD, Human Services

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• $30 million for community behavioral health clinics

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

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

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

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

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

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

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

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

Low RI Medicaid Rates Strain All Healthcare Services, Witnesses Say

By Gina Macris

Annette Bourbonniere

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

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

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

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

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

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

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

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

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

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

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

Louis DiPalma

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

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

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

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

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

According to the testimony:

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

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

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

Sherrica Randle

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

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

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

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

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

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

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

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

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

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

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

Shannon Sullivan

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The bills heard April 28 are:

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

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

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

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

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

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

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

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

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

  All photos from Capitol TV

Bills Would Set Competitive Rates For All RI Human Service Workers

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

New Relief Funding Welcome, But Forum Says Caregivers Still Undervalued

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The consequences of the workforce shortage have become dire:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI Dodges Contempt With DD Action Plan

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DiPalma: $184 M DD Wage Settlement In CT Should Guide RI Talks

DiPalma Photo by Anne Peters

By Gina Macris

Will higher wages for workers who help persons with developmental disabilities in neighboring Connecticut and Massachusetts force increased pay for similar workers in Rhode Island?

State Sen. Louis DiPalma says they should; particularly a two-year contract settled just a few days ago in Connecticut that gives frontline workers $16.50 an hour in the fiscal year beginning July 1 and $17.25 in July, 2022.

While leaders of private agencies in Rhode Island that provide services to persons with disabilities have tentatively agreed to a $15.75 reimbursement rate for entry-level caregivers, they did so reluctantly, saying that it’s not competitive enough to help them stabilize or expand their workforce.

And it’s not yet known whether that figure is acceptable to Chief Judge John J. McConnell, Jr. of the U.S. District Court, who has involved himself in workforce issues because they are connected to the state’s compliance with a 2014 civil rights decree requiring the integration of adults with developmental disabilities in their communities.

DiPalma, a strong advocate for those with disabilities and an influential legislator, said in a telephone interview with Developmental Disability News that the $15.75 hourly reimbursement rate the private providers tentatively accepted from the state is “necessary but not sufficient.”

Connecticut’s eleventh-hour settlement with the Service Employees International Union (SEIU) averted a strike of 2,100 group home workers who had planned to walk out June 4.

In addition to the wage hikes, the agreement provides 3-percent raises to those already making more than entry-level pay, as well as a a pool of $30 million over the next two years for enhanced medical and retirement benefits. The entire package will cost a total of $184.1 million, according to a statement from the Connecticut state policy office and department of developmental disability services.

In Massachusetts, personal care attendants who work with adults facing intellectual challenges, as well as with others who need daily assistance, make $16.10 an hour, according to the website of their union, 1199 SEIU East, a different branch of the same overall organization representing the group home workers in Connecticut. Rhode Island routinely loses some of its best developmental disability professionals to Massachusetts, and DiPalma said Connecticut is “not that far.”

The strike threat in Connecticut was “a means to an end,” DiPalma said.

“Never mind how they got there,” he said. The state wouldn’t have put up the $184.1 million in the two-year package unless it valued the workers, DiPalma said.

For the most part, the employees of some three dozen private providers of developmental disability services in Rhode Island are not unionized. Wage talks have involved their employers and state officials and revolve around reimbursement rates to the private agencies, not the wages themselves.

Because of differences among agencies in employee-related overhead costs, like workers’ compensation, the actual wages are not exactly the same as the reimbursement rates negotiated between employers and the state, according to Tina Spears, executive director of the largest provider trade association, the Community Provider Network of Rhode Island (CPNRI)

The most recent CPNRI calculations indicate that the average starting pay for direct care workers is $13.18, but there are other reports that some agencies pay $13.40 or a little higher.

Those organizations paying a little more have transferred revenue from other programs to subsidize services for adults with developmental disabilities, in a pitch to be a as competitive as they can in the midst of a huge worker shortage, DiPalma said. Not all the agencies have multiple sources of income, he said.

Judge McConnell has heard testimony that low pay and high turnover has adversely impacted the workforce that the state relies on to comply with the 2014 civil rights consent decree, which requires adults with developmental disabilities to be integrated in their communities. The state is nearly 1100 workers short of the number it needs to guide community-based services, according to a consultant’s report.

McConnell has ordered the state to set starting wages at $20 by 2024, with any interim raises being competitive with direct care pay in neighboring states.

McConnell has a private conference scheduled today, June 8 with lawyers in the consent decree case.

RI Faces High Cost For Fixing DD ADA Violations

By Gina Macris

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

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

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

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

Judge John J. McConnell, Jr.

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

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

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

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

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

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

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

Monitor’s Calculations More Limited In Scope

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

A. Anthony Antosh

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

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

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

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

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

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

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

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

Monitor’s Numbers “Illustrate” Solutions

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

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

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

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

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

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

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

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

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

COVID-19 Exacerbates Inequities

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

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

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

The crisis has been nine years in the making.

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

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

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

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

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

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

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

Read the court monitor’s report here.

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

OP-ED: RI Must Do Better By People With I/DD

By Terri Cortvriend

The COVID-19 pandemic has hit hardest the areas and populations that were already struggling, since they had the fewest resources for adaptation and safety. We’ve seen the outsized effects on the poor and on minorities. Another group that it has been disproportionately hurt is adults with intellectual/developmental disabilities (I/DD).

Photo Courtesy of RI Rep. Terri Cortvriend

Here in Rhode Island, adults with I/DD have not been provided adequate resources for many years. Before the pandemic, a federal judge was already mulling the possibility of ordering further overhaul of our troubled system of services. And then the pandemic shut down most day programs and employment opportunities, leaving this very vulnerable population without critical supports. Residents and underpaid staff at group homes have been at risk for illness, and those living at home face isolation and a reduction or loss of in-home support services. Agencies that serve them, which have mostly operated on the financial brink for years, are in danger of going under permanently.

The challenges of the pandemic and recovery from it threaten the already sub-par progress the state has made toward fixing this system. A Senate task force led by my colleague and fellow Aquidneck Islander, Sen. Louis DiPalma, has been shedding light on the obstacles, which include a fee-for-service structure that discourages innovation and integration.

Rhode Island must do better for its residents with I/DD. Every individual served is a deserving person whose needs include meaningful activities that support their personal goals and a valued role in their communities.

I urge my colleagues in the House to get on board with the Senate, where Sen. DiPalma has long worked to call attention to the need for better funding and a more workable system of supports for adults with I/DD. We need to join him in fully recognizing and supporting the importance of the work that must be done to provide enriching and effective services to Rhode Islanders with I/DD. We may be deeply ashamed of our state’s history – from the not so distant past – of “dumping” people with I/DD at the notorious Ladd School, but have we really come very far if we are not providing them with the means they need to have a fulfilling life in the community?

RI State Representative Terri Cortvriend, a Democrat, represents District 72 in Portsmouth and Middletown.

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.”

RI: Life And Death In Split-Screen Reality

Cassiana Fuller at work

By Gina Macris

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

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

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

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

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

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

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

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

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

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

NikolAS sIMIJIS wORKS aT wHOLE fOODS

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

RI DD Providers Seek Rate Hikes To Cope With Unprecedented Costs and Risks To Workers

By Gina Macris

Rhode Island’s providers of developmental disability services can expect help from state coffers as early as this week to compensate for losses resulting from the coronavirus, but those emergency payments are no more than the private organizations would have received if they had been able to conduct business as usual, according to the General Assembly’s chief advocate for people with disabilities.

The state’s developmental disability agency announced March 26 that $15.4 million has been set aside for up front “retainer payments” to private service providers over the next three months, including $7.4 million in state revenue and the rest in federal Medicaid funding.

State. Sen. Louis DiPalma, D-Middletown, says providers need more money, and a trade association representing them has asked for an hourly wage increase of $4.55 for caregivers of adults with developmental disabilities, who tend to be at greater risk than the average population for becoming infected with the coronavirus.

The hike, to an average wage of $17.73 an hour, would greatly narrow the pay gap between privately-employed direct care workers and those in state-run group homes, who now make a starting wage of $18.75, with state employee benefits, for the same work.

Meanwhile, the U.S. District Court in Rhode Island has become involved in discussions between state human services officials and the federal Medicaid program in an apparent effort to get federal relief for people and support staff in the developmental disabilities system, among other segments of the population that rely on Medicaid. The most concrete evidence of the Court’s involvement is an order issued by Chief Judge John J. McConnell, Jr. March 27 which seals “until further notice” seven draft documents having to do with the state’s Medicaid plan.

DiPalma, learning of the titles of the documents in the court order, said in a telephone interview that the news they were sealed surprised him, because the documents were shared among leaders in the developmental disabilities community for comment a week ago in lieu of a public hearing, given the unprecedented emergency of the COVID-19 pandemic and social distancing rules imposed by Governor Gina Raimondo.

The crisis threatens the viability of the private developmental disabilities system, which is the backbone of the state’s efforts to comply with a 2014 civil rights consent decree mandating integration of adults facing intellectual challenges in their communities. McConnell oversees implementation of the consent decree, which runs through 2024.

Daytime activities linked to compliance with the consent decree have shut down, and provider agencies have been forced to lay off staff because the employers can’t bill the state for the services. A spokeswoman for CPNRI, the trade association, could not immediately say how many layoffs have occurred.

Some agencies are estimating losses for the month of March up to $198,000, said the CPNRI spokeswoman, executive director Tina Spears. She said the losses are “destabilizing our ability to provide other critical services” throughout the crisis, with costs that exceed established funding levels.

Preliminary estimates from CPNRI members indicate their costs will exceed their annual budgets along a range from 2 percent to 20 percent, Spears said, although those figures will become clearer as each agency continues to track expenses.

On March 22, the Centers for Medicaid and Medicare Services loosened its rules, inviting states to apply for relief through a variety of variances, including rate increases and up-front emergency or “retainer payments.” “Retainer payments” is a federal Medicaid term.

Spears, the CPNRI director, submitted the request for the $4.55 wage increase March 25 to the state’s acting Medicaid Director, Benjamin Shaffer. Spears represents about two thirds of the three dozen agencies operating in Rhode Island, but she said any wage increase should apply to all developmental disability service providers, and to families who hire their own staff for loved ones. Spears said Pennsylvania’s retainer payments have built-in rate increases up to 40 percent, while Connecticut hiked rates for group homes and other residential settings by 25 percent in its retainer payments. Day programs in Connecticut will get another 5 percent in the retainer payments.

Layoffs of day program staff in Rhode Island will put a big strain on the unemployment insurance of the agencies, most of which are self-insured, Spears said. While income from day programs has stopped, agencies still have the same fixed costs, as well as new ones, as their focus shifts to respond to the threat of infection in group homes and other residential settings.

Existing fixed costs include rent, leases on vehicles used in programs, insurance, utilities, professional services, software, leases on office equipment, telephone and communications costs, and other expenses, she said. Unanticipated costs include:

• Employees taking time off under the federal Family Medical Leave Act, because of a need for childcare and other family situations, requiring agencies to maintain health insurance for them.

• Steeper costs for providing direct care to clients, because higher-paid staffers are needed to augment the efforts of regular front-line workers. These other employees include supervisors, managers, clinicians and nurses. • Added costs for aggressive cleaning protocols, involving more time from outside specialty contractors and more work done by agency employees. Providers also have scoured the market for hand sanitizer, personal protective equipment, and other supplies.

At the state’s Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the outgoing Director of Developmental Disabilities, Kerri Zanchi, says she will stay on “for a little while longer” to support the coordination between operations and funding during the healthcare crisis. Kevin Savage, the new acting director, and Heather Mincey, who is in charge of division social workers, round out the division’s leadership.

RI DD Legislative Commission Seeks To Change Payment Methods For DD Service Providers

By Gina Macris

Louis DiPalma * All Photos By Anne Peters

Rhode Island must find an alternative to the fee-for-service system used to reimburse private agencies that provide services to adults with developmental disabilities, a special legislative commission has concluded after more than a year’s study.

The 21-member panel chaired by State Sen. Louis DiPalma, D-Middletown, is finalizing more than a dozen recommendations, most of them aimed at changing key provisions of the payment system, known as Project Sustainability, which has been in place since 2011. Then, Rhode Island’s approach to serving adults with developmental disabilities relied heavily on sheltered workshops and day centers, an approach that figured in a civil rights investigation by the U.S. Department of Justice two years later.

Rhode Island no longer has sheltered workshops, thanks to a 2014 consent decree resulting from the DOJ investigation, which calls for enabling adults with developmental disabilities to become part of their communities in accordance with the U.S. Supreme Court’s Olmstead decision reaffirming the Integration Mandate of the Americans With Disabilities Act.

But the underlying regulations of Project Sustainability, coupled with inadequate funding, still hinder the best efforts of state officials, professionals and families to help adults with developmental disabilities engage in the activities they choose in their communities, according to testimony heard by the commission.

DiPalma presented the recommendations at a Jan. 14 meeting that concluded the work of the Project Sustainability Commission but set the stage for continued engagement by a smaller steering committee and subcommittees to advance the implementation of legislative and other changes.

The commission would replace fee-for-service reimbursement with “bundled” allocations for individuals that would give providers a set sum for each client over the course of a year, providing greater flexibility in individualizing programs. One recommendation would also simplify the billing process.

The current system guarantees funding for only three months at a time, with documentation of daytime activities required in 15-minute increments. By regulation, staffing ratios are linked to one of five levels of funding a particular person receives, not to the staffing required to support a person at any given time.

In this scenario, some residents of a group home may end up going along on a housemate’s outing, even though they have no interest in it. The commission recommends such ratios be eliminated to allow providers greater flexibility in assigning staff.

The commission’s recommendations cover some of the same ground as outside consultants who are in the midst of an 18-month study of the developmental disability system at the behest of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). The consultants are supervised by the New England States Consortium Systems Organization (NESCSO), which is expected to conclude its work June30.

DiPalma’s expectation is that NESCSO will recommend a way forward for a new funding model to support individualization and integration in the community, with an emphasis on increasing employment opportunities for adults with developmental disabilities.

Kerri Zanchi (R) Speaks while A. Kathryn Power, NewBHDDH Director, Listens

Kerri Zanchi, a commission member and director of the Division of Developmental Disabilities at BHDDH, reminded DiPalma during the Jan. 14 meeting that NESCSO was hired to provide the department with options, not to make specific recommendations on ways it should restructure.

DiPalma said he appreciated Zanchi’s remarks, but “we’re here because of 2011,” the year the General Assembly enacted Project Sustainability, with a $26-million budget cut that ignored recommendations by outside consultants. The average pay for direct care workers still falls below the benchmark of $13.97, an hour recommended by the consultants in 2011.

“We’re still trying to claw our way out of that hole,” DiPalma said. He reiterated his view that NESCSO should be asked to make recommendations, not simply suggestions.

High on DiPalma’s priority list is a multi-year effort to address critical shortages of direct care workers by gradually increasing wages to make Rhode Island competitive with Massachusetts and Connecticut, one of the funding-related recommendations supported by the commission.

He encouraged commission members to continue their advocacy in a direct and respectful manner. “Do not take no for an answer on changes that are necessary,” DiPalma said. “Do not be combative,” he said, but open the door to collaboration and compromise by outlining the problem and asking for help in figuring it out.

The Commission’s funding-related recommendations said the budgeting process should be transparent. The developmental disabilities caseload should be part of the Caseload Estimating Conference held in conjunction with the Revenue Estimating Conference twice a year by the chief fiscal officers of the governor and the legislature to better inform budget preparations regarding the state’s social service obligations, the commission said.

In addition, the state should no longer use a disability-related assessment for calculating individual funding allocations according to a secret formula, or algorithm. Instead, the commission said, the assessment, called the Supports Intensity Scale, should be used for helping planners design programs of support for adults with developmental disabilities, the purpose for which it was designed by the American Association on Intellectual and Developmental Disabilities.

To eliminate inherent conflicts of interest between the state funding apparatus and service providers, individual service programs should be written by independent planners, the commission recommended. It did not favor a separate multi-million dollar social service case-management entity, called a “Health Home,” which BHDDH hopes to set into motion with Medicaid funding to satisfy federal conflict-of-interest regulations.

The commission also wants to bring to the table a barrier cross-section of public agencies to work on eliminating barriers to integration, like challenges in transportation and employment-related services. These agencies would include the Rhode Island Public Transit Authority and the state Department of Labor and Training (DLT), in addition to BHDDH and the Office of Rehabilitation Services, as service providers, families and consumers.

DiPalma said he would like to see BHDDH ask DLT to take the lead on employment services for adults with developmental disabilities.

Among other recommendations are these:

• BHDDH should establish crisis intervention capabilities that can respond to mental health emergencies in the community and prevent costly psychiatric hospitalizations

• The state should create a seamless transition for young people and their families from high school to adult services. The existing process has been compared to “falling off a cliff.”

DiPalma said the recommendations will be finalized in the coming week to incorporate comments made at the meeting. A steering committee, including himself and seven other commission members, will remain active, setting into motion small working groups to address legislative and other issues and reconvening every three months to review progress.

He asked the commission members “to do one thing: hold yourself and each of us accountable to stay on track” on behalf of the 3,835 people who currently receive developmental disability services.

RI Project Sustainability Commission To Meet Jan. 14 To Wrap Up Recommendations

By Gina Macris

The special legislative commission studying the way Rhode Island pays for developmental disability services will hold its final meeting Jan. 14 to summarize some 70 recommendations that have been submitted by the commission’s 21 members, according to its chairman, State Sen. Louis DiPalma, D-Middletown.

The panel, which began its deliberations during the fall of 2018, has been dubbed the Project Sustainability Commission after the name of the fee-for-service reimbursement system for private agencies that deliver most state-funded social services to some 4,000 adults with developmental disabilities.

Project Sustainability, enacted by the General Assembly in 2011, has been widely criticized by service providers and families as an excuse to cut funding.

Project Sustainability is under review by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, which has hired outside consultants to expand its analytical capabilities. The review, expected to conclude in June, is separate from the commission.

The commission meeting on Jan. 14 will begin at 2:30 p.m. in the Senate Lounge of the State House.

Views Differ On Role of State Coordinator In RI Olmstead Consent Decree Case

By Gina Macris

The Rhode Island General Assembly’s leading advocate for individuals with developmental disabilities says there’s an inherent conflict in a state employee also serving as state coordinator of the multi-agency efforts to comply with a 2014 civil rights consent decree.

“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, said state Sen. Louis DiPalma, D-Middletown, who also chairs a special legislative commission studying Project Sustainability, the state’s fee-for-service reimbursement system for private providers of developmental disability services.

But the principal lawyer for the state in the consent decree case says that legally, it’s immaterial whether the consent decree coordinator is a state employee or an independent contractor. For many reasons, a state employee is the best choice at this stage of compliance, Marc DeSisto, the lawyer, said in a statement.

From 2016 until earlier this year, the consent decree coordinator, a position required by the agreement, was an independent contractor. The most recent contractor, Tina Spears, left the post in April. She was succeeded by Brian Gosselin, the Chief Strategy Officer for the Executive Office of Human Services (EOHHS.) Gosselin also continues to do his salaried job.

“The consent decree coordinator is a critical role in ensuring compliance with the consent decree and court orders. The responsibility includes coordinating across all state agencies,” DiPalma said in a recent telephone interview. “I don’t know how that’s done on a part time basis” by someone who also has another job.

Since the post was established in 2015 there have been five consent decree coordinators, including Gosselin, who has served as the interim coordinator twice.

In a statement, DeSisto said “the state as a whole is responsible for compliance, not a single coordinator.”

There is no legal impediment to a state employee serving as the coordinator, nor is there a requirement concerning the number of hours a week the coordinator must spend to fulfill those duties, DiSisto said.

“Over time and in recognition of the progress and evolving dynamics concerning compliance, we have refined the role of the coordinator to drive and coordinate the state’s ongoing compliance efforts,” he said.

An EOHHS spokesman said Gosselin was appointed because of his familiarity with the consent decree and because he would bring stability to the leadership of compliance efforts as the consent decree enters the second half of its 10-year span.

“The state cannot afford to have further turnover in the coordinator role,” David Levesque, the EOHHS spokesman said in an email, “especially during a time while there is going to be (a) Court Monitor transition.” Charles Moseley, the original monitor, has retired, and a new one has not yet been selected.

“A state employee is more likely to remain in this position than an independent contractor,” DeSisto said.

DiPalma agrees that “it’s critical that we have stability in that (coordinator’s) position, but no rationale has been given for why we have had five coordinators in the last five years. Without that information, I don’t know that the coordinator we have now is going to last any longer,” he said. He said his comments did not reflect any judgment of Gosselin.

Levesque, the EOHHS spokesman, said, “EOHHS is fortunate to be able to tap someone of Brian’s skill set and experience, particularly his intimate knowledge of the consent decree process in Rhode Island.”

He and DeSisto each said that the U.S. Department of Justice and Moseley, then the monitor, agreed to Gosselin’s appointment.

Gosselin will continue to be paid $117,482 a year as chief strategy officer, Levesque said, and has a team of staffers to support him in that role.

The independent contractors in the job, Mary Madden, Dianne Curran, and Spears, each made $100,000 a year.

Madden’s and Curran’s contracts said they each had the “full authority” of the Governor and the Secretary of EOHHS to oversee and coordinate compliance efforts in all state agencies

Beginning in December, 2018, changes in Spears’ job description and her contract suggest that her role might have become more circumscribed.

In December, the job description was amended to require the coordinator to make “weekly written reports to management team and EOHHS leadership team detailing coordination progress, achievements, challenges and upcoming milestones.”

Two other changes in the job description called for the coordinator to use a “mutually agreed upon escalation protocol to swiftly address issues of concern” and to use a “state approved communications and engagement plan when representing the state at public events and with stakeholders.”

The coordinator was to have a “designated team member” in each of the three primary agencies responsible for consent decree compliance as a point of contact for responding to “issues and concerns.” And the coordinator was required to include a “management team member” on all email communications related to the three respective agencies. The three agencies are the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals; the Office of Rehabilitation Services (part of the Department of Human Services) and the Rhode Island Department of Education.

At the end of Spears’ one-year contract in January, 2019, it was amended to include the revised job description and extended six months, to June 30, 2019.

Spears, who is now executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association of private service providers, offered her perspective on how the job description changed.

Spears, interviewed in August, said the consent decree coordinator has a unique role in coordinating activities among three separate state agencies to advance compliance with the consent decree, and there is a “natural tug-and-pull kind of dynamic” that can run in several directions.

“There were times when that (tug and pull) became challenging. I’m also the kind of person who’s pretty direct about what I expect and when it becomes challenging I usually address it. So we worked on agreement on how to develop a communications strategy” and a protocol to follow when there was disagreement, she said.

The job at the CPNRI became open when the former director, Donna Martin, announced her departure effective March 1. Spears said the new job was an opportunity to be a leader in systems change “in a way that really elevates our mission, elevates our voice, and elevates our practices.”

Spears, who has parented a child with extensive disabilities and medical issues, has worked at the Rhode Island Parent Information Network as a peer family mentor and government lobbyist. She also has worked as an analyst in the Senate Fiscal Office, where she said she learned about the consent decree and found her calling at the policy level. She left the Senate job to become consent decree coordinator in January, 2018.

RI Faces Uphill Climb Halfway Through DD Consent Decree Implementation

Bar graph from RI’s latest report to federal court monitor indicates RI is on track to meet one of three categories of employment targets in 2019. “Youth Exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

By Gina Macris

Halfway through Rhode Island’s decade-long agreement with the federal government to ensure that adults with developmental disabilities can work and enjoy leisure time in the larger community:

• Rhode Island has linked 38 percent of its intellectually challenged residents to acceptable jobs, prompting a federal monitor to warn that it needs to step up its game

• Service providers argue that continued progress will take a larger financial investment than the state is making

• Success stories abound but some families remain skeptical about whether the changes will ever work for their relatives.

Five years and three months after Rhode Island signed a federal consent decree to help adults with developmental disabilities get regular jobs and lead regular lives in their communities, 857 people have found employment. Yet, 1,398 others are still waiting for the right job match or for the services they need to prepare for work.

The pace of adding individuals to the employed category has slowed dramatically. Only 37 individuals were matched with jobs during the first two quarters of the current year. To meet its overall employment target for 2019, the state will have to find suitable job placements for 199 more adults. That would require a pace in the second half of the year that is five times faster than the first half.

Though the federal consent decree was signed in 2014, meaningful efforts to comply with its terms did not get underway until two years later, when a federal judge threatened to hold Rhode Island in contempt and levy fines if it did not take numerous and precise steps to begin compliance in a systematic way. At that point, state officials were struggling even to come up with an accurate count of the number of individuals protected by the consent decree, so inadequate was its data collection.

The active census of the consent decree population has grown since 2016, when the judge ordered the state to improve its record-keeping and the monitor forced the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Rhode Island Department of Education (RIDE) to look again at special education students who might be eligible for adult services.

The most recent figures show that there are 3,764 intellectually challenged adults active either with BHDDH or RIDE who covered by the consent decree.

Of that total, 211 were employed in the community prior to the consent decree. Some have signaled they don’t want to work, either because they are of retirement age or for other reasons. Nearly 1,200 others are still in school and not yet seeking jobs.

Of the 2,255 adults who must be offered employment over the life of the consent decree, 38 percent have landed jobs.

The figures are re-calculated every three months.

Employment data from the state’s report to the consent decree monitor as of June 30, 2019. broken down by categories of persons who must be offered jobs. “Youth exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

Rhode Island agreed to overhaul its services for the developmentally disabled population after an investigation by the U.S. Department of Justice found the state’s over-reliance on segregated sheltered workshops and day care centers violated the integration mandate of the Americans With Disabilities Act.

People with disabilities have the civil right to the supports and services they need to live as part of their communities to the extent that it is therapeutically appropriate, the U.S. Supreme Court said in the Olmstead decision of 1999, which upheld the integration mandate. In other words, integration should be the norm, not the exception.

Some people couldn’t wait to get out of sheltered workshops when the consent decree was signed and quickly found jobs in the community with a little bit of assistance. But some families with sons and daughters who have more complex needs saw sheltered workshops close without any transition plan. For some of them, the consent decree continues to represent a sense of loss.

At a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities (DDD), and Brian Gosselin, the state’s consent decree coordinator, had just finished applauding the successes of those who have found jobs or are on their way to shaping their careers, when Trudy Chartier spoke up on behalf of her daughter.

Trudy Chartier * all photos by Anne Peters

Her daughter is 55, deaf, has intellectual and behavioral problems and uses a wheelchair, Chartier said. She wants a job in the community and she’s been looking for five years.

Her daughter was in a sheltered workshop for a while, Chartier said, and “she loved it.”

“She didn’t care about making $2 an hour,” her mother said, and she made friends there. Now, she said her daughter “is not getting anywhere” and is “so dissatisfied.”

At the age of 80, Chartier said, she doesn’t have the energy she once had to help her daughter change things.

Later, Douglas Porch sounded a similar concern. “I can understand that the idea is to get them into the community, but what it’s actually done is destroyed my daughter’s community, because you’ve taken away her friends.”

“She’s in a group home, with nothing for her to do,” Porch said.

Zanchi, the DDD director, said that the consent decree certainly has changed the way people receive services. The intent is “not to isolate, but the opposite, to build communities,” she said.

“If that’s not working and it sounds like it’s not, we need to hear about that,” Zanchi said. “We can help you so that she can engage with her peers more effectively.”

Another parent, Greg Mroczek, also spoke up. “In terms of all the possible models, isn’t a sheltered workshop for a segment of the DD population the best possible model? Isn’t that what people are saying? It worked for my daughter as well,” he said, and nothing has replaced it.

Kerri Zanchi

He asked whether the sheltered workshop is “off the table” in “any way, shape or form” in Rhode Island.

Zanchi talked about the state’s Employment First policy, which values full integration and“investing in the skills and talent of every person we support.”

“We know that individuals of all abilities have had successful employment outcomes. We also know that employment is not necessarily what everybody wants,” Zanchi said.

“Striking that balance is a challenge,” she said. The state’s developmental disability service system and and its partners are working hard to help meet people’s needs, Zanchi said.

Rebecca Boss

When Zanchi was hired at the start of 2017, she was the first professional in developmental disability services to run the Division of Developmental Disabilities in about a decade.

Zanchi and Rebecca Boss, the BHDDH director, have improved the bureaucratic infrastructure to foster employment, professional development, quality control, and communications with families and consumers and the private agencies the department relies on to deliver services that will meet the monitor’s standards.

For example, the developmental disabilities staff has been expanded and reorganized. An electronic data management system has been introduced. BHDDH invited providers and representatives of the community to the table to overhaul regulations governing the operations of the service providers and has maintained a quality assurance advisory council, with community representation.

Broadly speaking, the leadership of Boss and Zanchi has set the tone for a philosophical shift in which employment is part of a long-range campaign to open the door to self-determination for adults with developmental disabilities – in keeping with the mandates of the consent decree. The state’s last sheltered workshop closed in 2018.

The consent decree also has fostered a revival of advocacy in the community and the legislature, where there had been a vacuum once an older generation of leaders had passed on.

So why isn’t the glass half full at the halfway point in the decade-long life of the consent decree? In a word, money.

Advocates say a central issue is the lack of an investment in the ability of the system to reach more people with the array of services that will open doors and enable them to find their places in the community.

To satisfy the requirements of the consent decree, the state relies on the efforts of private agencies that provide the actual direct services.

The federal monitor in the consent decree case, Charles Moseley, has asked the state to get to the bottom of what he described as a lack of “capacity” on the part of these private agencies to take on new clients.

BHDDH is circling around the funding issue with an outside review of the fee-for-service rate structure governing developmental disability services. That analysis is designed to expand the analytical capabilities BHDDH, leaving the policy decisions to the department leadership.

Advocates for adults with developmental disabilities, most prominently state Senator Louis DiPalma, D-Middletown, say there must be a public discussion about how much money it will take in the long run to complete the transformation from sheltered workshops and day care centers into one that assists people in finding their way in life. DiPalma chairs a special legislative commission studying the current fee-for-service system.

In the meantime, DDD is soliciting a proposal for the third iteration of its performance-based supported employment program, which is designed to focus on people who have never held a job. This group includes young people completing high school and seeking adult services for the first time, as well as adults who face multiple challenges and would find it difficult to fill the standard job descriptions put out by employers.

The new Person-Centered Supported Employment Performance Program (PCSEPP 3.0) is expected to launch Jan.1 with an emphasis on “customized” employment, tailored to match an individual’s strengths and interests with the needs of an employer who is willing to carve up the work at hand in a non-traditional way.

The concept of customization is not new.

In Rhode Island, a few adults with developmental disabilities have had customized employment for many years, most often arranged with the support of their families, who hire staff and direct a unique array of services for them rather than relying on an agency.

In addition, the Rhode Island Council on Developmental Disabilities promotes self-employment, a form of customization, through a business incubator created with the help of the Real Pathways RI Project sponsored by the Governor’s Workforce Board.

The DD Council highlights the products and services of self-employed adults with developmental disabilities as part of its annual holiday shopping event, Small Business Saturday Shop RI, scheduled this year for Nov. 30 at the Crowne Plaza Hotel in Warwick.

The U.S. Department of Labor defines customized employment as a “flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized determination of the strengths, needs, and interests of the person with a disability, and is also designed to meet the specific needs of the employer.”

Since the supported employment program started in 2017, providers have expressed concerns that, because it is tied to the fee-for-service reimbursement system, it does pay for initial investments the agencies might have to make to participate.

Those concerns persisted during a meeting between DDD officials and potential applicants for the customized employment program in mid July. At the providers’ request, DDD has extended the application deadline to October 4.

Womazetta Jones

The state’s new Secretary of Health and Human Services, Womazetta Jones, has promised to be a careful listener to the concerns of the developmental disability community.

Speaking at the recent public forum, after just eight days on the job, Jones acknowledged the state’s efforts to improve services for adults with developmental disabilities but also cautioned against complacency.

Even though the state has substantially increased funding for developmental disabilities in recent years and gained “stable and effective leadership” at BHDDH, “that doesn’t mean anyone in this room or state government is content with recent progress,” she said.

“The moment we think we don’t have more to do, is the moment we have lost our way,” Jones said, signaling that she is available for further discussion of issues affecting people with developmental disabilities.

RI House Gives Extra Bump To Pay Of Front Line DD Workers As Budget Deliberations Near End

By Gina Macris

The Rhode Island House has added a total of $9.6 million in federal-state Medicaid funding to boost the pay of direct care workers for adults with developmental disabilities in the state budget for the fiscal year beginning July 1.

The increase, awaiting approval by the Senate, represents the largest single-year investment in wages since drastic cuts were made in 2011. In 2016, the legislature earmarked $5 million for a rate hike, and the next year it added $6.1 million.

But the rates for Rhode Island’s direct care workers still lag behind those of neighboring Connecticut and Massachusetts.

This year’s wage hike is was part of an overall $296.9 million allocation for developmental disabilities, which includes $13 million in federal Medicaid reimbursement to create a third-party case management initiative called a Health Home.

In an unusual Saturday session June 22, the House also addressed a shortfall in the current developmental disabilities budget, adding $2.9 million in supplemental funding.

Developmental disability services encompass both the private system serving about 4,000 clients and a state-operated network of group homes for about 125 individuals, accounting for more than half the spending in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). The House-authorized spending cap for BHDDH in the next budget is $463.2 million.

A spokesman for House Speaker Nicholas A. Mattiello explained a floor amendment that raised the total earmarked for a wage increase in Governor Gina Raimondo’s budget from $6.4 million to $9.6 million.

Larry Berman said the governor’s $6.4 million, including $3 million in state funding and $3.4 million in federal reimbursements, will mean a 41-cent raise to the hourly rate for direct support workers on July 1. The hourly rate, which he put at an average of $12.27, would rise to $12.68, Berman said.

The additional $3.2 million in the floor amendment, including $1.5 in state revenue, will be applied Oct. 1, triggering an additional wage hike of 41 cents an hour, for a total hourly rate of $13.09 during the last nine months of the fiscal year, Berman said.

In the past, increases for direct care workers have meant that supervisors and other support personnel have also received raises. But Berman confirmed that this year, the allocation earmarked for pay bumps apply only to front-line caregivers. In all, about 4,000 work in the private sector in the field of developmental disability services.

Berman’s figures refer to the basic hourly wage rate in the BHDDH reimbursement model for private providers, but that doesn’t mean each direct care worker will get the increase he cited.

Many variables exist in the way each of the providers figures out how much to pay workers and how much to set aside for benefits and other employer-related expenses. All that means that the amount of the actual wage hikes will vary.

In the past, the state and the private providers have differed on how far a rate hike will go.

In a statement, Mattiello took credit for redirecting additional funds to direct care workers.

“When about $1 million was identified as available in the budget, I suggested it go to those workers who are providing outstanding care to the developmentally disabled community. They deserve this rate increase.”

The Community Provider Network of Rhode Island, (CPNRI) a trade association of about two dozen providers, posted its thanks on Facebook:

“CPNRI is pleased to see the commitment of the Speaker, Senate President and Governor and all the Representatives and Senators who have supported increased wages for DD workers in Rhode Island in the 2020 budget. This investment not only will raise wages for this invaluable workforce, it supports individuals with intellectual and developmental disabilities to lead meaningful lives in our communities. Thank you to all who have prioritized this workforce.”

The wage increase is assured passage in the Senate, where developmental disability services have the support of the leadership, including Senate President Dominick J. Ruggerio, William J. Conley, Jr., Chairman of the Senate Finance Committee; and Sen. LouisA. DiPalma, first vice-chairman of the Senate Finance Committee.

The extra push in funding occurred just as Mattiello sought to tamp down a controversy involving a Cranston chiropractor, who was to receive a $1 million authorization to bill the state for services for an unproven neurological treatment for traumatic head injury and other disorders that failed to qualify for federal Medicaid reimbursement..

On June 20, Mattiello announced he would pull the $1 million in funding from Victor Pedro, because the issue had become too controversial and he wanted to avoid a lengthy floor battle, even though he still supported the chiropractor.

Berman said most of the last-minute $1.5 million-increase in worker wages came from the allocation that Mattiello pulled from the chiropractor, along with funds from various other accounts.

Spending for already-established developmental disability programs and services from all revenue sources in the next fiscal year would be capped at $284 million – about $12.3 million more than originally approved for the current fiscal year. Most of that figure comes from the federal-state Medicaid program.

Meanwhile, the House approved a revised developmental disabilities budget of slightly over $274.6 million for the current fiscal year, which is $2.9 million more than the $271.7 million the General Assembly enacted a year ago.

The revised figure includes about $1.7 million in state revenue that represents an adjustment for an audit finding that the state was incorrectly leveraging federal Medicaid money to pay for fire code upgrades in group homes and other facilities serving adults with developmental disabilities, Berman said. Capital projects are now all assigned to the Department of Administration, he said.

Without supplemental funding and savings in other BHDDH accounts, the cost of services in the privately-run developmental disability system would have exceeded the amount the General Assembly originally allocated by about $3.8 million in General revenue.

A third-quarter spending report prepared by BHDDH said that the total state share of Medicaid-funded direct services in the private system is projected at about $111.4 million by June 30. The enacted budget for the current fiscal year allows $107.6 million in that category, but the supplemental funding recommended by the Governor and approved by the House reduces the projected shortfall in state funds to about $152,000, when combined with savings in other accounts.

In the third-quarter spending report for the current fiscal year, BHDDH officials project about a 1.5 percent increase in overall caseload growth and a $1.5 million increase in supplemental funding to clients who successfully appeal the individual amounts allocated for their services.

Counting all the Governor’s proposed supplemental funding for BHDDH in all three divisions, as well as savings in some budget line items, the department projected a year-end surplus of about $438,000 as of March 31.

RI Budget Controversy Touching House Speaker Yields Extra Money For DD Worker Raises

By Gina Macris

Bowing to intense political pressure, Rhode Island House Speaker Nicholas A. Mattiello said June 20 that he will pull a $1-million budget line item for an unproven neurological service that doesn’t qualify for Medicaid funding and reallocate most of the money to raises for those who care for adults with developmental disabilities.

The budget, passed by the House Finance Committee June 13, now contains $3 million in state funding and $3.4 million in federal Medicaid funding – a total of $6.4 million – to raise the pay of direct care workers, who earn significantly less than those doing the same job in Massachusetts and Connecticut.

On the Tara Granahan morning show on WPRO radio, Mattiello said he continues to support chiropractor Victor Pedro of Cranston, who practices what he calls Cortical Integrative Therapy (CIT). The Speaker said he is removing the $1 million from the proposed budget “only because it’s politically controversial.”

“Do I think that’s the right thing to do? I’m not convinced of that, but we’re going to pull it because the issue has become very controversial,” Mattiello told Granahan.

Mattiello’s spokesman, Larry Berman, said later in the day that most of the $1 million allocation for CIT will be added to the raises for direct care workers because “Speaker Mattiello believes these are some of the hardest-working and dedicated employees in the state.”

The General Assembly’s leading champion of adults with developmental disabilities, Sen. Louis DiPalma, D-Middletown, tweeted his appreciation for Mattiello’s decision to re-direct the funds to the wage raises. “THANK YOU VERY MUCH!!!!! It is needed, most welcomed and greatly appreciated!!!!!”

Even if all $1 million were added to a line item set aside in the budget for the raises, the total would still be far below the $28.5 million advocates have sought in state funding to stabilize the workforce, plagued by high turnover and a high job vacancy rate.

Berman could not say exactly how much will go to the raises. The breakdown will be available when the full House convenes June 21 to consider the state’s $9.9 billion- budget for the fiscal year which begins July 1, he said.

Any addition of state funds to worker pay will generate about 52 cents on the dollar in federal Medicaid reimbursement, in effect doubling the amount available.

Without the extra allocation, the proposed budget’s $6.4 million for wage hikes would add an average of 34 to 44 cents an hour to the pay of about 4000 direct care workers. Private providers and state government differ on their estimates of how far the money will go.

Entry-level direct care workers make an average of $11.44 an hour, according to a trade association of service providers, while more experienced colleagues are paid an average of $12.50 an hour. The Connecticut legislature enacted a minimum wage of $14.75 for personal care workers in 2018, and Massachusetts pays about $15 an hour.

On the morning talk show, Mattiello defended the chiropractor, who has donated to several political campaigns, including his own, even while he explained why he is pulling the money.

“I’m going to have a terrible debate on the (House) floor. So politics is what it is, and I’m going to do something that I should not do,” Mattiello said.

“I will continue to support the doctor because I think he brings a unique and special treatment to a lot of kids and folks who have no place else to go.”

While Mattiello said Pedro has had “great success,” the federal Medicaid program has turned down the state’s request for federal reimbursement for the treatments because of a lack of scientific evidence that they are effective.

Mattiello said he met Pedro in connection with his law practice before he was elected to the General Assembly and was impressed by the testimonials of his patients.

One of Pedro’s patients was the late father of former Rep. Frank Montanaro, Jr., Mattiello said in the radio interview. Montanaro now works as executive director of the financial and administrative office of the General Assembly.

The first budget allocation for CIT dates back more than a decade. Since Governor Gina Raimondo took office in 2015, her administration has tried to cut the CIT allocation out of the budget, without success.

Mattiello’s latest attempt to restore funding for Pedro that had been cut by the Raimondo administration caught the eye of blogger Steve Ahlquist of Uprise RI. His investigative article sparked the outrage of the state Republican Party and numerous other critics of the Speaker.

Collaboration Needed to Find Jobs, Solve Transportation Problems, For People With DD

By Gina Macris

For people with developmental disabilities, reliable public transportation – or the lack of it – can mean the difference between accepting a job offer and staying home.

A Coventry, RI man who had a chance to work at a Home Depot near his home faced that dilemma when he learned that the state’s paratransit system for people with disabilities could not go into the shopping center where the store is located.

To solve the transportation problem, the man’s family and his job developer, Rory Carmody, Director of Program Services at AccessPoint RI, pitch in to drive him to and from work, said Carmody’s boss, Tom Kane. But the hours the man can work are limited to the times Carmody and the man’s family are available for drop-off and pick-up, said Kane.

Kane, the CEO of AccessPoint, shared the story in a conversation after a June 18 meeting of a special legislative commission studying Project Sustainability, the state’s fee-for-service reimbursement system for private services for adults with developmental disabilities.

L to R: Scott Jensen and Scott Avedesian

The session focused on the intersection of jobs and transportation, featuring remarks from three speakers:

· Scott Avedesian, CEO of the Rhode Island Public Transit Authority (RIPTA)

· Scott Jensen, Director of the Department of Labor and Training (DLT)

· Robert Kalaskowski, Chief of Policy and Planning for the Governor’s Workforce Board.

The example of the Coventry man illustrates the challenges of relying on the paratransit program, which operates only along corridors that mimic RIPTA’s regular bus routes. The shared RIde program for people with disabilities may drop off and pick up at sites no more than three-quarters of a mile outside a regular bus route, according to the RIPTA website.

Because RIPTA doesn’t send regular buses to Little Compton or Foster, the RIde option for residents with disabilities is not available either, said Sen. Louis DiPalma, D-Middletown. And, he added, there’s only one public transit stop in Tiverton.

Recently, the directors of the agencies responsible for services for the elderly and those with intellectual and developmental disabilities accompanied Avedesian on a paratransit run that picked up four individuals, one of them in a wheelchair, and took them to their various destinations.

Rebecca Boss, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said it was a “really good experience for everyone to see the hands-on, labor-intensive type of transit that we perform.”

For the officials, the experience took two and a half hours, from the time the van left the RIPTA garage to get the first client until the time it returned, Avedesian and Boss agreed. It happened to be a day with a lot of traffic, Avedesian added.

Even though the clients weren’t on the van all that time, Kate Sherlock, a commission member, said the run took too long. “I cry when I have to be in the car for two hours,” she said.

Avedesian said that for him, the biggest takeaway from the experience was the need for matching the locations of clients and available jobs to minimize travel time, “so that we’re not taking someone all the way from Woonsocket to Newport.”

Avedesian said he’s impressed by the “intensive amount of time, money and labor involved in moving one person from one end of the state to the other.”

DiPalma said the average cost of a paratransit run is $34, but the program is reimbursed roughly $8 to $14 of that cost, depending on the intensity of the client’s disability. He said the reimbursements are Medicaid-authorized federal and state transportation dollars assigned to BHDDH clients to cover travel. No public transit system in the country is financially self-sufficient, DiPalma noted.

DiPalma has convened an informal group of representatives of public and private agencies who are interested in solving the transportation problems of people with disabilities. The agencies include BHDDH , DLT, RIPTA, the Community Provider Network of Rhode Island, the Providence Chamber of Commerce, the office of U.S. Rep. James Langevin, and others, he said.

Moving forward, transportation must become more malleable to the needs of the people, he said. If someone lives in Glocester and has a job in Newport, that person may be able to get work closer to home, but “if that’s the job they have, that’s the job they have,” DiPalma said.

Jensen

Jensen of DLT offered a different way of looking at the transportation problem.

If people with developmental disabilities can be viewed as a source of excellent workers, rather than a population needing support, a stronger argument can be made for investing more in transportation, because of the value this group brings to the economy, he said.

“The company will be receiving value, the person will be paying income tax and can buy more things than they otherwise would,” Jensen said.

He said “coalitions of the willing” are “trying to find those positions where companies recognize the value of people with developmental disabilities. That takes time.”

He said a “handful” of companies, like Home Depot and CVS, have made the “moral choice” to employ individuals with developmental disabilities.

“We want to also help make this a practical choice” for many businesses, Jensen said, by starting with employers’ demands and finding the right match in the labor force - “the right person, in the right place, at the right time, and with the right skill set.”

BHDDH officials recently put the employment rate for adults with developmental disabilities at 29 percent.

Kalaskowski

Kalaskowski, of the Governor’s Workforce Board, said the state is promoting that strategy in the Real Pathways program, part of the broader Real Jobs initiative.

In Real Pathways, DLT works with private providers of employment-related services for adults with developmental disabilities, promoting collaboration among job developers to find the best match between the employer’s demand and worker skills.

A job developer working alone may not have just the right client and face the choice of either forcing a match that won’t work out in the long run or letting a relationship with an employer die, Kalaskowski said. In a network of job developers, one may pass along a lead to another and they will return the favor down the line, he said.

Andrew McQuaide, a senior director with Perspectives Corporation, said Jensen and his team deserve “a lot of credit” for fostering a culture of collaboration.

McQuaide recalled how one man with developmental disabilities connected with a training opportunity offered by the Rhode Island Nursery and Landscape Association because both he and AccessPoint’s Rory Carmody “spread the word.”

Then, when a job with a landscaping company opened up, someone in the community who knew the man from the RINLA training recommended him for the position. The man got the job “not because DLT put any dollars forward,” McQuaide said, but because of the “culture and the connections” that DLT promoted.

Boss, the BHDDH director, said she is excited about the collaboration with DLT. Tracey Cunningham, the director of employment services, and other dedicated officials at BHDDH do a good job in helping adults with developmental disabilities find work, but the staff at DLT “lives, eats and breathes” jobs, she said.

The next meeting of the Project Sustainability commission, set for June 25, has been cancelled because of likely schedule conflicts as the General Assembly wraps up its 2019 session, DiPalma said. He said the meeting will be re-scheduled sometime in July.

RI DD System Needs Stable Funding For Quality Services and Productive Lives - Commission

By Gina Macris

A successful model for funding Rhode Island’s developmental disability services would be more complex than simply increasing workers’ wages, members of a special legislative commission agreed at a meeting May 6.

Kelly Donovan, a commission member who herself receives services, said the work of the support person is “not a job; it’s a commitment.“

In a high-quality system of services, Donovan said, direct support professionals and the people they serve have a relationship. They develop strong bonds.

The discussion nevertheless returned repeatedly to the lack of funding that permeates the system, with rules that commission members say make it rigid and unresponsive to those needing services.

Peter Quattromani, CEO of United Cerebral Palsy of Rhode Island, said agencies that ask their employees to “ commit” to the persons they serve also require them to commit themselves to “a life of poverty” because employers, dependent on state funding, can’t pay salaries commensurate with professional work.

As a result, Quattromani said, the agencies are hiring “very temporary employees.”

“We don’t appreciate what it takes on the part of the individual to turn their life over to a staff person,” Quattromani said. Every time there’s turnover, there’s a new intrusion in that person’s life, he said.

The CEO of West Bay Residential Services, Gloria Quinn, said “I can think of examples when people go along with people and don’t know them. It gets complicated to do the right thing at the right time.”

But West Bay Residential has an annual staff turnover rate of 34 percent and a job vacancy rate of 15 percent, said Quinn, who recommended a system that is adequately funding, “including appropriate compensation for a well-trained workforce.”

At the same time, she said, there are employees who are doing an “incredibly important and skillful job” even without the compensation they deserve.

Sen. Louis DiPalma, D-Middletown, the commission chairman, said there is a great disparity in pay in two parallel systems of services.

“We do value the profession” of supporting adults with developmental disabilities, he said, as long as it is the state-operated network of group homes and facilities called RICLAS, short for Rhode Island Community Living and Supports. But private providers, who perform the same direct support work, are not valued, DiPalma said, referring to the state’s chronic underfunding of these agencies.

He said he never saw the situation quite that way until Tom Kane, CEO of AccessPoint RI, framed it in those terms during a recent budget hearing before the Senate Finance Committee.

RICLAS workers start at about $18 an hour, while entry-level workers in the private system average about $11.40 an hour. On an annual basis, the starting salary at RICLAS is $37,291, according to a spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). As state employees, RICLAS workers also get a full package of benefits.

DiPalma said that when the current fee-for-service reimbursement model was enacted by the General Assembly in 2011, the “right questions weren’t asked. We can’t let that happen again.”

He said he firmly believes that today, all legislators would say they value the work done in supporting adults with developmental disabilities, but “the critical thing is ‘how do we get there’? “ He alluded to a reimbursement model in which wages reflect the value of the work.

In Kelly Donovan’s vision of the future, adults with developmental disabilities will receive training and support in making their own decisions in an informed manner. And support persons will respect those decisions, she said.

Kate Sherlock, a commission member and lawyer with the Rhode Island Disability Law Center, concurred.

For a long time, the role of the staff person has been to “speak up for people,” she said. Instead, staff should facilitate decisions made by clients.

But clients “do not have the real opportunity to decide what they want, because there are not enough options,” Sherlock said. Decisions should not be “either-or,” she said. “It shouldn’t be ‘do you want chocolate or vanilla ice cream.’ “

“People want to live with people they choose. They want a job they like and they want to make a decent amount of money,” Sherlock said.

Enabling clients to make meaningful decisions about belonging to their communities and engaging in activities they want, as well as giving them the opportunity to eat healthy foods and be active and fit will at the same time elevate the staff role into a position that can have greater impact and be more desirable – even fun, Sherlock said.

The Disability Law Center supports a bill that would give legal standing to adults who support those who need assistance in decision-making, Sherlock said, but the measure is encountering difficulties in the Senate. DiPalma said he would look into it.

Commission members agree that Rhode Island needs to abandon its fee-for-service reimbursement system in favor of one that gives clients an annual budget with flexibility to spend it on what they want and need to enable them to live regular lives in their communities, in accordance with a 2014 consent decree and federal Medicaid rules reinforcing the Integration mandate of the Americans With Disabilities Act (ADA).

Not only is the current system under-funded but it is saddled by rules that make it too restrictive, they say.

Among the needs discussed May 6 are funding for:

• training and career paths for staffers

• Technology, such as smart phones and other devices and software, that can help clients become more independent from staff.

• ·Easier access to transportation, which might include Uber and Lyft options to lessen clients’ dependence on staff time, which can be better used providing other types of supports

• Better access to affordable housing

• More intensive community-based mental health services that can prevent psychiatric hospitalizations.

In addition, the developmental disabilities caseload must be counted in a way that better informs budget makers, according to Quinn, the CEO of West Bay Residential Services.

All the recommendations which members have presented through May 6 can be found here .

The next meeting will be May 22, when commission members are expected to continue presenting their recommendations.