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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• shifting from quarterly to annual per-person budget authorizations

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

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

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

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

Additional recommendations include:

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

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

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

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

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

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

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

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

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

By Gina Macris

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

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

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

Dominic Ruggerio

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

The House used similar language in a separate letter.

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

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

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

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

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

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

Joseph Shekarchi

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

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

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

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

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

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

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

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

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

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

RI Faces High Cost For Fixing DD ADA Violations

By Gina Macris

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

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

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

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

Judge John J. McConnell, Jr.

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

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

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

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

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

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

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

Monitor’s Calculations More Limited In Scope

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

A. Anthony Antosh

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

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

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

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

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

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

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

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

Monitor’s Numbers “Illustrate” Solutions

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

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

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

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

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

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

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

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

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

COVID-19 Exacerbates Inequities

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

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

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

The crisis has been nine years in the making.

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

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

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

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

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

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

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

Read the court monitor’s report here.

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

RI: Life And Death In Split-Screen Reality

Cassiana Fuller at work

By Gina Macris

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

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

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

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

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

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

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

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

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

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

NikolAS sIMIJIS wORKS aT wHOLE fOODS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Union Raises Strike Possibility At Northern RI DD Provider Over Submarket Wages; No Deadline Set

By Gina Macris

Unionized workers supporting about 250 adults with developmental disabilities have indicated they may strike at Seven Hills Rhode Island over wages that lag significantly below those in neighboring states. No deadline has been set for a walkout.

The possibility of a strike by about 180 members of the United Nurses and Allied Professionals (UNAP) was disclosed in a letter that the management of Seven Hills sent to families Jan. 15. Talks between labor and management continue, according to a source with knowledge of the negotiations.

An official of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) indicated that the union must give a 10-day notice of any walkout.

Kevin Savage, Associate Director for Quality Management, said Jan.18 that “BHDDH is in close contact with Seven Hills administration, who have put together a plan to ensure coverage of necessary services in the event that the union gives them a 10-day notice that a walk out will occur.”

He said BHDDH contracts with Seven Hills to support about 250 persons with developmental disabilities in a variety of residential settings, as well as supported employment services and non-work daytime activities.

The Jan. 15 letter to families, signed by Seven Hills’ vice president, Cliff R. Cabral, said that a work stoppage could force the agency to suspend or reduce “several program offerings.”

“Our day services program will be limited to 24 residential participants,” Cabral said. Seven Hills has 76 residential clients, according to the latest data compiled by the state.

Efforts to reach Cabral or a UNAP spokesperson were not immediately successful.

Average entry-level wages for direct care workers in Rhode Island are $11.36 an hour, according to the most recent figure released by the Community Provider Network of Rhode Island, a trade association representing two thirds of the private providers of developmental disability services in the state.

Governor Gina Raimondo has proposed an incremental raise – estimated by BHDDH at an average of about 44 cents an hour – effective July 1.

In Connecticut, entry-level direct care workers must be paid a minimum of $14.75 houirly. The Connecticut legislature approved the raises last May, even though it had not yet acted on the state budget, to avert a strike that had been planned at that time by the Service Employees’ International Union (SEIU). The wage hikes became effective three weeks ago, on Jan. 1.

SEIU also has negotiated a $15 hourly minimum wage with Massachusetts for direct care workers in that state that went into effect July 1, 2018.

In the letter to families, Cabral said that “Seven Hills Rhode Island stands with our employees and will continue to advocate on their behalf for the living wage they deserve.”

He said Rhode Island’s system of care for adults with developmental disabilities still has not recovered from the General Assembly’s $24 million reduction in services in 2011. (Final figures on actual spending put the total over $26 million.)

Despite repeated and concerted advocacy, “our state representatives continue to place funding for individuals with developmental disabilities low on their priority list,”he said. The General Assembly’s inaction has significantly “compromised the sustainability of the current system,” which, Cabral said, has been weakened by below-market compensation and high staff turnover.

“Organizations such as ours have taken several painful measures throughout the past decade in an effort to ensure our fiscal sustainability, including liquidating assets and significantly reducing our administrative resources,” Cabral wrote.

While it has adhered to the “highest delivery standards possible,” Seven Hills cannot sustain its efforts indefinitely, Cabral said. He called on UNAP to join with management “to more productively direct our collective efforts toward lobbying for a substantial investment in this year’s state budget in order to adequately address the needs of those with developmental disabilities while ensuring a living wage for the remarkable individuals who support them.”

Seven Hills Rhode Island offers a variety of services for children, families and adults, with offices in Cranston and Woonsocket. Services for adults with developmental disabilities are based in Woonsocket, covering northern Rhode Island.

Rhode Island's DD Workers Would Get Estimated 44-Cent Pay Raise In Governor's Proposed Budget

By Gina Macris

Roughly 4,000 people who work with Rhode Islanders challenged by developmental disabilities would get an average pay increase estimated at 44 cents an hour effective July 1, according to Governor Gina Raimondo’s budget proposal for the 2020 fiscal year.

The average entry-level worker now makes $11.36 an hour, according to the Community Provider Network of Rhode Island, a trade association.

The wage increase would represent an additional $6.4 million in federal-state Medicaid funding, including $3 million in state revenue, according to an overall $9.9 billion budget Raimondo submitted to the General Assembly Jan. 17.

The budget plan also includes a 60-cent increase in the minimum wage, which would raise it from the current $10.50 to 11.10 an hour, if the General Assembly approves.

Other budget details involving developmental disability spending are still developing.

Experts: Sustainable, Effective DD Systems Support Individuals; Don't Pigeonhole People In Groups

Mary Lee Fay and William Ashe * All Photos By Anne Peters

By Gina Macris

When it comes to reforming service systems for those with developmental disabilities, policy makers often succumb to a fundamentally flawed approach, one expert told a Rhode Island Senate study commission Jan. 8.

Policy makers tend to “think about people in groups, but not think about people as people,” said William Ashe at a meeting of the commission, looking into how Rhode Island supports private service providers.

Ashe has helped the state of Vermont evolve toward a system that puts the needs of the individual first.

He also has become familiar with Rhode Island as a consultant to the federal court monitor overseeing implementation of a 2014 consent decree requiring the state to transform its segregated service model to a system that is integrated with the community.

Asked his opinion of Rhode Island system, Ashe said that what he’s seen leads him to believe it is a “barrier” to people’s ability to live more “independent and connected lives.” Ashe said his opinion is his own, not that of the monitor.

His comment,, however, happened to coincide with findings of the U.S. Department of Justice in 2014, which said Rhode Island’s funding rules incentivized segregation.

Ashe is executive director of Upper Valley Services, which serves a single county in Vermont that is about half the size of Rhode Island. He addressed the commission along with Mary Lee Fay, executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS).

Fay presented a broad swath of statistics on nationwide trends, but she nevertheless arrived at basically the same place as Ashe, talking about building services around relationships between persons with disabilities, their families and other important people in their lives.

How To Apply Best Practices To Rhode Island?

The session raised questions about how members of the commission will process the information in coming weeks and apply it to Rhode Island.

For private providers, Rhode Island has a fee-for-service system authorizing payments to providers only three months at a time, for a fixed menu of supports, requiring documentation of each worker’s daytime interaction with each client in 15-minute increments.

There is also a parallel state-run system of group homes that is exempt from the rules applied to private providers, even though they are all paid through the federal-state Medicaid program.

With all its emphasis on making private providers accountable for each minute of service, Rhode Island’s funding model has no definition or measure of what the services are supposed to accomplish in terms of stabilizing or improving people’s lives.

Successful outcomes were a recurring theme among the best practices described by Ashe and Fay.

L to R: Commission Members Deb Kney, Kevin McHale, Tina SPears, and Chairman Louis DiPalma

After the meeting, the commission chairman, Sen. Louis DiPalma, D-Middletown, said the speakers offered a lot of “food for thought”. At the same time, he said, he wants to know more about the context of the successes in Vermont.

There, the predominant housing option is shared living in private homes – even for individuals who have challenging behavior - and services are tailored, or “bundled,” for a year’s time into individualized funding authorizations based on a person’s needs and goals.

Vermont’s system has been decades in the making, and DiPalma said he wants to know more about how the state got to where it is today. He said he expects commission members to begin airing their thoughts about the future of Rhode Island’s developmental disability system at the next meeting, yet to be scheduled, in late January.

Demographics, Economics Converge To Squeeze Human Services

Fay said that all the states are facing the same pressures, driven in part by the aging of the large population born after World War II.

Baby boomers have:

• Increased the demand for the same type of direct care workers for the elderly as those who are employed in the field of developmental disabilities

• Driven up the federal Medicaid and Medicare expenses, both entitlement programs with no cap.

Illustrating her point, Fay said that the fastest segment of the population is the elderly aged 85 and older. About 70 percent of that group needs some kind of assistance, she said.

Meanwhile, the expansion of Medicare and Medicaid, combined with last year’s tax cut, will lead to continuing debate in Congress about the future of these safety-net programs, Fay said.

At the same time, demographic projections point to a shortage of direct care workers. The group most likely to go into direct care work – women aged 18 to 55 – remains flat in demographic projections 20 years into the future.

Low wages are an issue with the current workforce, but Fay said the demographics indicate there just will not be enough workers to go around in the future. States “won’t be able to buy” their way out of the labor shortage, which will get much worse in the years to come, she said.

Instead, she said, states will have to “think” their way out of the crisis with a new approach; less reliance on 24-hour care and more supports built around families – and employment.

In Vermont, that approach seems to have paid off more often than not, according to Ashe.

Ashe’s agency is one of ten organizations in Vermont which have broad responsibilities within a designated area for serving adults with developmental disabilities, although there are several other specialized providers without geographic boundaries.

To receive immediate funding, individuals must meet high-priority standards as defined by law. They involve such factors as health and safety considerations or the need for care while both parents work outside the home.

In 2017, there were 238 people statewide on a waiting list for non-priority services, Ashe said.

Ashe’s agency, Upper Valley Services, covers Orange County, an area half the size of Rhode Island with a total population of 28,000, mostly spread out in towns and villages with populations of fewer than 1,500. There is one traffic light in the entire county, Ashe said.

Ashe said all service plans are individually designed and reviewed by a board which includes representatives of providers and consumers as well as state officials. The board’s recommendation is submitted to the state, which makes the final decision on services and funding.

Vermont and RI Differ on Funding Approaches, Wages

Vermont, like most other states, allocates funding on an annual basis. Rhode Island is the only state which funds services quarterly, Fay said.

And unlike Vermont, Rhode Island allocates funding first and expects providers to come up with an individual service plan that doesn’t exceed the budget.

Ashe credits the Vermont legislature for making a practice of anticipating an increasing caseload and funding to meet its needs, rather than forcing providers to dilute the supports for people they already serve to cover the new arrivals.

In 2017, Ashe said, 390 people benefited from the legislature’s new-caseload funding practice, he said.

Vermont’s designation of responsible agencies means they cannot reject anyone in their geographic area who meets the eligibility criteria for priority funding. As a one-stop shop for everyone, Ashe’s agency provides a broad range of services to about 200 individuals in its jurisdiction.

The starting wage at Upper Valley Services is $14 an hour and the annual turnover is 13 percent, significantly lower than the statewide turnover rate of about 23 to 25 percent. If Ashe must serve a particularly challenging client, he said, he has the authority to increase a worker’s hourly rate. Instead of $14, he said, he might pay $18.

Rhode Island providers pay an average entry wage of $11.36 an hour, according to a trade association, although some workers new on the job make minimum wage, which is $10.50 an hour. Job turnover in Rhode Island averages about 33 percent each year, although the rate varies among individual providers.

Nationwide, the average state-level rate of turnover is 46 percent, according to Fay.

In Vermont, the average cost of services per person is $60,037, Ashe said, slightly higher than in Rhode Island.

In a statewide population of just over 600,000, Vermont supports about 4,500 people with intellectual or developmental disabilities, about the same number as in Rhode Island, with a population of slightly more than one million.

Individuals have control over their service plans and may move money from one category to another, manage part or all of their services themselves, or let the agency be the service manager.

Employment And Housing

Among the clients of Upper Valley Services, 48 percent have jobs, averaging 8 hours a week, Ashe said.

Nationwide, the employment rate for adults with developmental disabilities is 19 percent, according to Ashe and Fay. Rhode Island’s rate is above the national average, but an exact figure was not immediately available.

Fay emphasized that employment is important not only for income, but also because a job provides autonomy and leads to connections with other people.

Shared living is one of five housing options in Vermont that, taken together, offer a broad range of supervision, up to and including intermediate care with a maximum of six residents in one facility.

The annual stipend for shared living is about $32,500. Ashe said he expects one responsible adult in the family to stay at home and not take an outside job.

Shared living should be viewed as part of a relationship, Fay said, not “foster care” or a “placement” that has nothing to do with the participants’ connections to each other.

24-Hour Case Management Key To Success

Ashe said the core of his operations is a network of case managers, each one with a caseload of about 14 people, who are on call 24 hours a day.

Case managers may arrange respite care for shared living providers or provide additional in-home supports, among a broad range of activities that include diffusing a crisis experienced by someone on their caseload.

In most instances, Ashe said, “the problem is not the person but the services around that person.”

His agency focuses on “re-building the support system to help that person stay in the community,” Ashe said.

In Vermont in 2017, there were five psychiatric admissions among adults with developmental disabilities, according to figures provided by Ashe.

Responding to a question from Rebecca Boss, Director of the Rhode Island Department of Behavioral Health Care, Developmental Disabilities and Hospitals, Ashe described the history of a crisis team begun in 1991 and crisis training for direct care staff in the field that has helped keep the number of psychiatric hospitalizations low.

Lending a national perspective, Fay said states are learning not to bring families to the table and expect them to speak a bureaucratic language to ask for a specific program, but instead to discuss ‘what is happening in your life and how can we support you?’’

Sometimes, families accept more services than they need, because they fear they will not be able to get them in the future, Fay said.

“I have visited states where people say, ‘I’ve taken a service not because I need it, but because if I say no, I’m afraid I won’t get access to anything in the future,’ “ Fay said.

States have to build trust in families, she said. Systems have to be designed to create an underlying confidence among families that the support will be there as the family’s needs change, she said.

Fay said “there isn’t a system out there that has it down perfectly,” but “states that do it well succeed because they have partnerships” with their communities.

To see an outline of Fay’s full presentation, click here.

To view a video of the commission meeting, click here. Look for an icon labeled with the date 1-8-19 and a title that reads “Special Legislative Study Commission To Evaluate Project Sustainability.” Note that some browsers may need Flash to play the video.

'Our Lives Turned Upside Down' When Daughter Entered RI Adult DD System, Mother Says

Louis DiPalma, Rebecca Boss, and Kerri Zanchi watch A. Anthony Antosh of Rhode Island College present consumer and family perspectives on the state’s services for adults with developmental disabilities Photo by Anne Peters

By Gina Macris

A Rhode Island Senate study commission spent nearly two hours Dec. 12 laying out a catalog of strengths and weaknesses in Rhode Island’s system for helping people with developmental disabilities.

But in the end, the personal stories of two mothers, Amy Kelly of Smithfield and Martha Costa of Portsmouth, focused the commission’s attention on the crises now unfolding for at least several families who are at their wits end.

In the catalogue, their experiences come under “residential services-need for specialized medical/behavioral residential models.”

For Amy Kelly, that means that every single service provider in Rhode Island – about three dozen - has turned away her 21 year-old daughter, who is autistic, has behavioral problems, and functions in many ways as a kindergartener.

“So now what do I do?” Kelly asked in a letter to the commission chairman, Sen. Louis DiPalma, D-Middletown. Kelly is a widow, and works fulltime. Her daughter, Kayla, was asked to leave the Trudeau Center in Warwick because of injuries to staff.

For a month now, Kayla has been at home all the time and her problematic behaviors have intensified, Kelly wrote. “She is out of her routine, asking for “friends,” “yellow bus,” “trip,” and other favorite things and experiences that she misses..

Kelly has been forced to choose “self-directed” services, meaning that she must find her own workers,“which is pretty much impossible,” she wrote to DiPalma.

And the Home Based Therapeutic Services that helped Kayla outside of school hours while she was still in special education are no longer available.

“I cannot believe there are no programs in RI for families in this situation!” Kelly wrote. “When my daughter turned 21 in May everything in our lives turned upside down.”

Martha Costa * courtesy of Capitol TV

Martha Costa agreed. She attended the Commission hearing at the State House on behalf of her own family and five others in Portsmouth who have become friends as their children have faced behavioral challenges growing up and have aged out of the school system into purview of the state Division of Developmental Disabilities (DDD).

As the mother of a 22 year-old man on the autism spectrum, she said her experience has been that once young people with complex needs turn 21, “there is really no place for them to go.”

The family might be told to go to a hospital, but with the exception of Butler Hospital in Providence, a mental health facility, “the hospital is horrible, because it’s just more trauma going there.”

The 21 year-old daughter of a friend of Costa’s had meltowns after her mother – her primary caregiver and the one who organized her services - died in September. The woman’s daughter, who has multiple disabilities, was hospitalized because there was “nowhere for her to go,” Costa said. The young woman was “restrained, medically and physically. It’s heartbreaking,” Costa said.

“It’s lucky you have good parents who are helping these kids, but you know, we’re all getting older and we’re not going to be able to,” she said. The aging of parents, who are often primary care givers, is a broad concern among families, according to survey results.

“There are some kids who don’t have that parent support and they’re on the street,” Costa said. “That’s sad, when they can be a very productive part of our community.”

Kerri Zanchi, the state’s Director of Developmental Disabilities, thanked Costa for coming forward.

One of the biggest challenges in residential services, Zanchi said, is a dearth of specialized homes for individuals with behavioral and other complex needs, as well as a lack of therapists and other clinicians to give them the proper attention.

“There’s a huge need coming” as teenagers with complex disabilities leave schools, she said. “We need to know what that need is and we need to start working on it lot earlier than when they turn 21 and come into our system.”

Zanchi referred to the division’s Eligibility by 17 policy, which aims to give families, schools, and the adult system plenty of time to plan a smooth transition.

In the catalogue, one of the “challenges” the state officials listed in implementing the Eligibility by 17 policy is “resource and service difference for transitioning youth vs adult services.” In the summary that family and consumer representatives submitted, they commented that “transition from high school is a ‘nightmare.“

Zanchi continued her response to Costa. “We certainly recognize every day the crises we have to manage” in order to support the individuals involved and to try to grow the system’s capacity, she said.

And there are committed providers who are willing to help the state, but who also want to do that with the right staffing that will keep all individuals safe, Zanchi said. “We are all hands on deck. I know it probably doesn’t feel like enough,” she said.

Costa agreed. “ I understand what you’ve been doing and I know that everyone has been working hard . Still, it’s not enough,” she said.

Gloria Quinn, executive director of West Bay Residential Services, said her agency works very well with the state as a partner in exceptional situations, but it is extremely difficult as long as there there is a paucity of established expertise in the community that is accessible to the developmental disabilities providers.

“Very often we are creating something new, which takes an enormous amount of time,” Quinn said, and the funding is not enough. Most importantly, when the agency helps someone with increased needs it runs the risk of jeopardizing supports for other people, particularly in a residential setting, she said.

Peter Quattromani, President and CEO of United Cerebral Palsy Rhode Island, pointed to the low wages for direct care staff that frustrate all involved; those who love the work but can’t pay the bills, employers who can’t fill jobs, and consumers and families who can’t find suitable services.

“It’s an incredibly difficult job” , he said, and attracting staff is likewise very difficult, given the low wages.

Commission member Kelly Donovan, who herself receives services from DDD, had sparked the conversation by wondering aloud why those with serious behavioral problems have difficulty finding appropriate support.

She said she agreed with Quattromani and Costa, and she added another factor that she believes contributes to the problem: a societal stigma against those with a broad range of mental illnesses who exhibit aggressive behavior.

During the last month, commission members, representing the executive branch of government, private providers, and consumers and their families, were asked to complete a survey cataloging the strengths and weaknesses of the existing Medicaid fee-for-service system, called Project Sustainability.

The commission plans to use the results of the survey, named the “Current State Assessment,” to seek advice from outside experts and further the group’s deliberations in the future, according to a statement issued at DiPalma’s behest.

Directly or indirectly, a lack of adequate funding in various contexts permeated three summaries of the survey results, each one presented by a representative of each of the three segments of the commission. Transportation, for example, has become a bigger problem now that there is a greater emphasis on community-based services, which require more than the two daily trips usually allowed by individual funding authorizations. Families also cited difficulties of non-English speakers in getting information and services.

But Rebecca Boss, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, also said the developmental disabilities budget has increased significantly since 2015, and listed advances made in the last two years, including:

• $6.8 million for supported employment

• two annual wage increases for direct care workers (The average hourly pay for front-line workers is $11.36 an hour)

• the acquisition of a modern data management system

• an increase in staff for quality management, implementation of a federal civil rights consent decree and for Medicaid-mandated Home and Community Based Services, as well as assistance in maximizing the existing budget.

She described the funding needs of the system as “dynamic.”

“We are engaging in discussions with our partners about what those needs are,” Boss said. “Governor (Gina) Raimondo has demonstrated a willingness to look at the system and make adjustments in the budget as we go along. So this is the process that we’re currently working on and engaging in those conversations on a regular basis.”

Raimondo is to present adjustments for the current budget, as well as her proposal for the next fiscal cycle, during the third week of January.

Christopher Semonelli, a commission member and the father of a teenager with complex needs, commented on the origins of Project Sustainability, which seemed to him like system “in a death spiral, and there was basically a feeding frenzy as to how to continue the system; how to go after the available funds.”

“I don’t think the legislative base should be blamed” for cutbacks that launched Project Sustainability in 2011, “because there was a lack of advocacy, “he said. “Strong advocacy could have prevented that from happening. That is huge and needs to be built going forward.”

DiPalma had the last word. Semonelli “made a great point about advocacy, but he shouldn’t let the General Assembly off the hook,” DiPalma said. “This is where the buck stops.”

Read the summaries presented at the meeting. For the state’s assessment, click here. For consumer and advocates’ comments, click here. For service providers’ comments, click here.

RI Project Sustainability Commission To Meet December 12 To Air Views On Existing DD Services

By Gina Macris

The Rhode Island Senate’s Project Sustainability Commission, which is evaluating the state’s fee-for-service Medicaid payment system for private agencies serving adults with developmental disabilities, will meet Wednesday, Dec. 12 at 3 p.m. in the Senate Lounge at the State House.

Three members of the commission will summarize the views of all 19 panel participants regarding the planning, programming, and funding of the current system, as well as the family or consumer experience, according to the commission chairman, Sen. Louis DiPalma, D-Middletown. State officials, private providers, families, and consumers of services funded through the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals are all represented on the commission.

The meeting is open to the public, and a portion of the session will be reserved for comments from the audience, DiPalma said.

RI DD Services: The Annual Scramble Begins To Avoid Waitlists or Reduced Payments To Providers

By Gina Macris

For the second consecutive year, the director of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has raised the possibility that adults with developmental disabilities might face waiting periods for services if the department cannot resolve a projected $9,.4 million deficit by next June.

Most of that estimated $9.4 million shortfall - $7.6 million – occurs in the Division of Developmental Disabilities (DDD).

Waiting lists and reductions in reimbursement rates to private providers are among alternatives proposed by BHDDH director Rebecca Boss in a corrective action plan for dealing with the shortage in state revenue. Private organizations do most of the front-line work with adults facing intellectual and developmental challenges.

Any state agency running over budget must submit a corrective action plan to the state budget office. Seven other agencies are in the same position as BHDDH.

While complying with the requirement for a deficit-reduction plan, BHDDH also has prepared a budget request which seeks a additional $12.7 million in state revenue for the private system of developmental disability services through June 30, 2020. That total includes:

• $7.6 million in supplemental funding to close the gap in payments to private service providers during the current fiscal year.

• $5.1 million for the fiscal year that begins July 1, 2019.

No Wage Hikes In BHDDH Budget Request

The combined $12.7 million request does not reflect any wage increases for direct care workers in private agencies, a BHDDH spokeswoman said. According to a trade association, workers receive an average of $11.36 an hour - less than the $12 hourly pay offered at the Target store on the other side of the Massachusetts state line in Seekonk during Thanksgiving week.

The consultant involved in developing the existing fee-for-service rate structure seven years ago said recently that it’s “past time” for an overhaul of the reimbursements. Both House and Senate leaders say they support the idea of wage hikes for front-line workers.

Governor Gina Raimondo has not responded to email requests from Developmental Disability News for comment on recent public remarks of the consultant, Mark Podrazik, President of Burns & Associates.

Raimondo is due to present her budget proposal to the General Assembly the third week in January. She must consider many factors, including a projected $41.9 million deficit in overall state spending and recent revenue estimates running about $5.4 million below the previous projections, made last May.

Federal Officials Watching Budget Process

A lot can happen between now, the start of the budget planning cycle, and the end of June, when General Assembly adopts final figures to close out one fiscal year and launch a new budget on July 1.

And when it comes to spending on developmental disabilities, the conversation has broadened in the last several years to include the ever-increasing demands for reform imposed by a 2014 federal civil rights consent decree between the state and the U.S. Department of Justice.

Before the budget was finalized in the last session of the General Assembly, the independent federal court monitor for the consent decree had sought and obtained written assurances from Raimondo that the state would support mandated systemic changes in services as Rhode Island moves toward community-based, integrated supports of adults with developmental disabilities.

In a letter dated May 14, 2018 to Charles Moseley, the federal court monitor, Raimondo said, “Rhode Island has made significant progress in meeting the requirements of the Consent Decree, and we will continue to prioritize this work.”

What the state’s commitment to developmental disabilities looks like in the current budget is level funding.

Last January, Raimondo proposed a cut of $18.4 million to payments for private service providers, but after better-than-expected revenue estimates in May, pressure from constituents, and Moseley’s request for assurances, Raimondo reversed her position and the General Assembly approved a status quo budget.

Boss Details The Current Problem

Now Boss says that level funding will not be enough to meet expenses, primarily because of an increasing caseload and rising average costs per person. These two trends can be traced back to compliance with the consent decree.

In the last fiscal year, which ended June 30, DDD spent a total of $228.3 million in federal-state Medicaid funds, including $111.1 million in state revenue, for payments to private agencies that provide most of the developmental disability services, Boss wrote to the state Budget Office in October.

The current budget authorizes an expenditure of $229.4 million for those Medicaid payments, with $107.5 from state revenue and the rest from the federal government.

However, in the current budget, DDD is expected to stretch the $229.4 million to cover some additional mandates:

• a total of $1.5 million on contracts and staff to support the consent decree

• $620,000 – about $400,000 more than anticipated – to pay for an increase in wages for home health aides and licensed practical nurses (LPNs) who serve adults with developmental disabilities in their own homes. Boss said the state Medicaid office had set a slightly higher rate for the LPNs than the department had anticipated.

Together, these two factors mean that there is $1 million less in the current budget than there was in the last one for actual services to adults with developmental disabilities, Boss wrote in a report to state Budget Office on spending for the first quarter of the fiscal year.

At the same time, DDD estimates its overall caseload will increase about 1.5 percent during the current budget cycle, based on trends over the last two years. That increase will cost an additional $1.1 million from state revenue,, according to Boss.

In addition, nearly 900 persons are slated for re-evaluation of their needs during the current fiscal year, with interviewers using a revised assessment that has been resulting in generally higher per-person costs since it was adopted in November, 2016, Boss said. The use of the revised assessment, the Supports Intensity Scale – A, is expected to add about $900,000 from state revenue to service costs, Boss wrote in the first-quarter spending report, submitted in October.

Moreover, DDD expects to spend all $6.8 million allocated by the General Assembly for a supported employment program that pays private providers performance bonuses for job placement and retention., The first allocation, in the fiscal year that began July 1, 2016, was underutilized.

Boss said she did not favor a wait list for services as a corrective action plan because it would cause hardship and make DDD unable to continue complying with the 2014 federal consent decree.

Rate reductions to private service providers also would make it impossible to comply with the consent decree and would destabilize the entire system of care, Boss said.

Savings anticipated in State-Run Group Homes

Boss said she does favor another option, consolidation of the state-run group home system known at Rhode Island Community Living and Supports (RICLAS.) DDD is working on closing one state-run group home and relocating existing staff to save on overtime costs, Boss said.

Changes in group home configuration toward smaller units more accessible to the community are being required anyway by the Medicaid Home and Community Based Final Rule.

The consultant for Burns & Associates, Mark Podrazik, recommended in 2011 that the state gradually eliminate RICLAS to more more equitably fund private providers, who were facing severe cuts in payments that resulted in dramatically lower wages and made it difficult for employers to fill job vacancies, problems that persists today.

In testimony Nov. 13 before a special Senate commission, Podrazik said he was told in 2011 that the state did not want to address RICLAS out of concern about a fight from unions.

Over the last several years, however, the size of the RICLAS caseload has declined through attrition. For example, at the start of 2016, there were 210 persons in RICLAS homes, state officials said at the time. Six weeks ago, in mid-October, the RICLAS caseload had shrunk to 126, according to state records.

RI House Speaker And Senate President Both Support Higher Pay For DD Workers

By Gina Macris

The top two leaders in the Rhode Island General Assembly say they support the idea of increasing the pay of workers who provide services for adults with developmental disabilities.

“I am very supportive of the developmentally disabled community,” said House Speaker Nicholas A. Mattiello, “and I believe those people who care for them should receive a rate increase. The House of Representatives will certainly strongly consider such a request in next year’s budget deliberations.”

Senate President Dominick J. Ruggerio is likewise supportive, a spokesman said.

“The Senate President supports increasing wages for providers of services for individuals with intellectual and developmental disabilities,” Ruggerio’s spokesman said, adding that “Senator Louis DiPalma (D-Middletown) has provided extraordinary leadership on this issue, including a proposal to gradually increase wages for providers, and the Senate President supports his initiative.”

Whether Governor Raimondo will consider increasing funding for the private system of care for adults with developmental disabilities in her budget proposal for the next fiscal year remains to be seen. Her office has not responded to a Nov. 20 email seeking comment on possible pay increases.

Developmental Disability News asked the state’s leaders whether they would consider re-visiting reimbursement rates after Mark Podrazik, the president of the healthcare consulting firm Burns & Associates, told a Senate commission chaired by Senator DiPalma that a review of pay hikes is warranted.

DiPalma’s commission is studying the current fee-for- service system, called Project Sustainability, which Burns and Associates was instrumental in developing seven years ago. While the consultants took the lead in the project design, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) disregarded the actual reimbursement rates the firm proposed, instead reducing most of them by 17 to 19 percent before forwarding the final version of the plan to the General Assembly in the spring of 2011.

Burns & Associates recommends a rate overhaul once every five years, Podrazik told the commission Nov. 13. After nearly seven and a half years, “it’s past time,” he said.

Podrazik testified that Project Sustainability was shaped by the state’s drive to control costs, but by that measure, the system has failed.

The developmental disability budget repeatedly has run over the limits set by the General Assembly, and the gaps have only increased during the last few years as the U.S. District Court has enforced a federal civil rights agreement with the state that requires Rhode Island to integrate adults with developmental disabilities in their communities.

That approach, necessary to correct violations of the Americans With Disabilities Act, costs more than the reliance on sheltered workshops and segregated day centers codified in Project Sustainability.

DiPalma, the chairman of the Project Sustainability commission, takes exception to a view that the developmental disability services program has been overspending.

“If the budget was unrealistic from the get-go, you’re going to exceed that budget,” he said at the commission meeting Nov. 13. He has studied developmental disability service budgets for ten years, he said, and none of them have been realistic.

Increasing wages for direct care workers “needs to become a priority” for a number of reasons, DiPalma said in a telephone interview. “If it’s a priority, we’ll find the money.”

In 2016, DiPalma called for a $15 hourly wage for direct care workers by July 1, 2021, but now he says “we need to get there faster.”

And he indicated he no longer believes $15 is enough. For example, Massachusetts, an easy commute from many places in Rhode Island, is already paying that amount to members of the Service Employees Union International who work with persons with disabilities. A bill signed by Governor Charles Baker in June put Massachusetts on a path to a $15 minimum wage in five years.

At one time, those who worked with adults facing intellectual and developmental challenges had full time jobs with benefits. But Project Sustainability resulted in drastic cuts to wages and benefits that destabilized the workforce, forcing many to leave the field or to take two or three jobs to make ends meet.

Turnover averages about one in three workers a year, and employers are unable to fill one in six jobs, according to the Community Provider Network of Rhode Island, a trade association. At the same time, the demands of the consent decree require more highly skilled staff.

Since July 1, 2016, the General Assembly has enacted two relatively small pay increases for direct care staff and their supervisors at private agencies serving adults with developmental disabilities, but the average pay, $11.36 an hour, is still two dollars less than the hourly rate of $13.97 which Burns & Associates recommended in 2011.

Healthcare Consultant Says "It's Past Time" For RI To Revisit Rates It Pays For Private DD Services

From foreground, on the right, Rebecca Boss, Louis DiPalma, Peter Quattromani, Kelly Donovan, Deb Kney, and Kevin McHale, all members of the Project Sustainability Commission. DiPalma is chairman. All photos by Anne Peters

By Gina Macris

Rhode Island is overdue in undertaking a comprehensive review of rates it pays private providers of services for adults with developmental disabilities, according to a top official of a healthcare consulting firm who helped develop the existing payment structure seven years ago.

Mark Podrazik

“It’s past time,” said Mark Podrazik, president and co-founder of Burns & Associates. He said the firm recommends an overhaul of rates once every five years. Podrazik appeared Nov. 13 before a Senate-sponsored commission which is evaluating the way the state organizes and funds its services for those facing intellectual and developmental challenges.

The commission chairman, Sen. Louis DiPalma, D-Middletown, had invited Podrazik to help the 19-member panel gain a deeper understanding of the controversial billing and payment system now in place before it recommends changes intended to ultimately improve the quality of life of some 4,000 adults with developmental disabilities.

Burns & Associates was hired by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) in 2010 to develop and implement Project Sustainability, a fee-for-service system of payments to hold private providers accountable for the services they deliver and give consumers more flexibility in choosing what they wanted, Podrazik said.

In answering questions posed by commission members, Podrazik made it clear that the final version of Project Sustainability was shaped by a frenzy to control costs. The state ignored key recommendations of Burns & Associates intended to more equitably fund the private service providers and to protect the interests of those in the state’s care.

Podrazik said that overall, Burns & Associates believed the Division of Developmental Disabilities (DDD) had neither the capacity or the competence implement Project Sustainability at the outset or to carry out the mandates to companion civil rights agreements with the U.S. Department of Justice reached in 2013 and 2014.

“I think people were a little shocked” by the new federal requirements to integrate day services in the community and by the question of “who was going to do it,” Podrazik said of the DDD staff at the time.

DDD also had an antiquated data system that ill served Project Sustainability and the separate demands for statistics imposed by a federal court monitor overseeing the consent decrees.

Podrazik said the aged IT system was the biggest problem faced by Burns & Associates.

Asked whether funding changed to implement the civil rights agreements, Podrazik said he didn’t recall that there were any significant changes, if any at all. Burns & Associates ended its day-to-day involvement with BHDDH in Feb. 2015, when Maria Montanaro became the department director. (She has since been succeeded by Rebecca Boss, and there has been a complete reorganization and expansion of management in DDD. A modern IT system recently went online.)

Between the fall of 2015 and early 2016, Burns & Associates had a separate contract with the Executive Office of Human Services, which asked for advice on cutting supplemental payments to adults with developmental disabilities.

While Project Sustainability was supposed to give consumers more choice, the U.S. Department of Justice found just the opposite in a 2013 investigation.

DOJ lawyers wrote in their findings that “systemic State actions and policies” directed resources for employment and non-work activities to sheltered workshops and facility-based day programs, making it difficult for individuals to get services outside those settings.

“Flexibility” Functioned As Tool For Controlling Costs

At the meeting Nov. 13, Andrew McQuaide, a commission member and senior director at Perspectives Corporation, a service provider, suggested that features of Project Sustainability ostensibly designed to encourage flexibility and autonomy for those using the services functioned in reality as mechanisms to control costs.

Podrazik said, “In my heart of hearts, I think everybody wanted more flexibility,” but “then the financial constraints were imposed in such a way that the objectives could not necessarily be met.”

“We were not hired to cut budgets,” Podrazik said. Going into the project, “we did not know what the budget was” for Project Sustainability.

He said Burns & Associates recommended fair market rates for a menu of services under the new plan. For example, it proposed an hourly rate for direct care workers was $13.97. But BHDD refused the consultants’ advice to fight “aggressively” for this level of funding, Podrazik said. With the budget year that began July 1, 2011, BHDDH recommended, and the General Assembly adopted, a rate of $12.03 an hour, nearly two dollars less.

The state had the option to change the rate effective Oct. 1, 2011, and it did, dropping the hourly reimbursement for direct care workers to $10.66 to absorb last-minute cuts made by the General Assembly in the developmental disabilities budget for the fiscal year that had begun July 1. (Rates have increased slightly since then. The average direct care worker made about $11.36 an hour in early 2018.)

“I understood why the department (BHDDH) was doing what they were doing, because they were getting an incredible amount of pressure on the budget – so much so that they were getting their hand slapped when they were over,” Podrazik said.

“From the outside coming in, there was a lack of confidence that BHDDH could actually administer a budget that came in on target, so that there was an intense scrutiny to keep the budget intact. It did not help that that they were cut and that there were no caseload increases (in the budget) for multiple years,” Podrazik said.

“They were behind the eight-ball before anything was contemplated,” he said.

Louis DiPalma, Rebecca Boss

DiPalma, the commission chairman, saw the situation from a different perspective: “Someone will say the agency exceeded the budget, but if it was unrealistic from the get-go, you’re going to exceed that budget.”

As a legislator, DiPalma said, he has looked at developmental disability service budgets for ten years, and there hasn’t been one that was realistic.

“Right,” Podrazik replied, adding that funding for developmental disabilities had been declining from year to year in Rhode Island, even before Burns & Associates was hired for Project Sustainability.

Podrazik said he hasn’t been following developmental disabilities in Rhode Island during the last few years, but “somebody should look at the rates, if for no other reason” than “we’re in an economy that’s very different than it was in 2010.” He cited health care costs and a move toward “$15 an hour wages.”

“It’s a whole different landscape,” he said.

Consultants Recommended Eliminating Separate State-Run DD System

In 2011, with Project Sustainability facing a funding shortage even before it got off the ground, Burns & Associates recommended that BHDDH get more money to support the services of private agencies by eliminating – gradually – the state-run developmental disabilities system, called Rhode Island Community Living and Supports (RICLAS.)

At the time, average per-person cost for a RICLAS client ran about three times more than the average in the privately-run system. All the RICLAS clients could eventually be transferred to private providers, Burns & Associates advised the state.

“This recommendation was shut down immediately, with the reason being a protracted fight with the unions,” Podrazik said in prepared remarks.

Burns & Associates then recommended lowering the reimbursements to RICLAS. “This was also shut down,” Podrazik wrote.

“It was apparent early on that there were funds to be redistributed between RICLAS and the Private DD system, but there was no appetite to do so. It is unclear exactly where this directive was coming from within state government, but that was the directive given” to Burns & Associates, Podrazik wrote.

Providers Expected To Maintain Same Service For Reduced Pay

Commission members asked Podrazik whether anyone at Burns & Associates or state government believed that it was possible for private service providers to absorb the rate reductions written into Project Sustainability, given the fact that about half the agencies were already running deficits before the program was enacted.

McQuaide quoted from the memo that BHDDH sent the General Assembly in May, 2011, explaining its approach to implementing Project Sustainability.

“We did not reduce our assumptions for the level of staffing hours required to serve individuals,” the memo said. “In other words, we are forcing the providers to stretch their dollars without compromising the level of services to individuals,” the memo said.

McQuaide asked, "Did anyone actually think that was possible?”

“I don’t know,” Podrazik replied, but he remembered meetings in which participants expressed sentiments similar to the quotation highlighted by McQuaide.

Given the budgetary restrictions, Podrazik said, he favored reducing rates rather than cutting back on services or creating a waiting list for services.

Podrazik said Burns & Associates was hired to deal with certain problems; not to review services for adults with developmental disabilities top to bottom.

Assessment Used For Funding Became Controversial

Asked to change the assessment used to determine each person’s need for support, Burns and Associates recommended the Supports Intensity Scale, or SIS, and advised it should be administered by an entity “other than the provider or the state to avoid the perception of gaming the system,” he said.

The state went forward with the SIS, linked it to funding individual authorizations, or personal budgets for clients, and assigned the administration of the assessment to the state’s own social caseworkers.

The fact that the SIS is administered within BHDDH has been criticized by the DOJ and an independent federal court monitor. With federal scrutiny on BHDDH, and numerous complaints from families and providers that the SIS scores were manipulated to cut costs, the department switched to a revised SIS assessment and retrained all its assessors in November, 2016.

Funding Authorized Three Months At A Time To Control Costs

According to Podrazik, Burns & Associates recommended each client’s funding authorization – or personal budget – be awarded on an annual basis, to allow individuals to plan their lives and providers to look ahead in figuring out expenses.

But the state insisted on the option to change reimbursement rates on a quarterly basis as a means of managing costs more closely within a fiscal year. That was the feature of Project Sustainability which enabled BHDDH to impose two consecutive cuts on providers, once on July 1, 2011, and a second time on Oct. 1, 2011. Since then, rates have increased incrementally.

At the hearing, Podrazik illustrated the difference between a yearly authorization and a quarterly one in the life of a consumer.

“Maybe someone goes away for the month of August,” he said. If that person has a quarterly authorization, the money for services in August reverts to the state. But with an annual authorization, the funding can be used for the person’s benefit during another month of the year.

Podrazik agreed with a commission member, Peter Quattromani, CEO of United Cerebral Palsy, that quarterly authorizations compromise the flexibility intended to be part of the design of Project Sustainability.

Podrazik said he knows of no other state that makes quarterly authorizations for developmental disability services.

DiPalma, the commission chairman, asked if there was any thought given to the impact of a requirement that providers document how each staff person working during the day spends his or her time with clients, in 15-minute blocks.

Podrazik said, “I don’t think people thought the impact would be negligible, but the desire for accountability outweighed that, and I fully endorsed them.”

Project Sustainability decreased overhead costs to private providers but did not offset those cuts with allowances for hiring the personnel necessary to process the documentation.

When DiPalma thanked Podrazik for his time, Podrazik quipped that Rhode Island was “the last place I thought I’d ever be.”

“The Rhode Island project wore me down, so I’m working with hospitals these days,” Podrazik said.

He said he came back to Rhode Island because DiPalma was very persuasive and because he wanted to “set the record straight” on the involvement of Burns & Associates with Project Sustainability.

Burns & Associates President To Speak To RI Senate Commission Studying DD Reimbursement

A special commission of the Rhode Island Senate on “Project Sustainability” will meet Tuesday, Nov. 13 to hear a presentation from the president of a healthcare consulting firm which helped the state develop its current fee-for-service Medicaid reimbursement system for private providers who serve adults with developmental disabilities.

The speaker, Mark Podrazik , is the president and co-founder of Burns & Associates, an Arizona-based company which advised the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) on recommendations BHDDH made to the General Assembly. The legislature made the final decisions about the reimbursement model, which was enacted in 2011.

Burns & Associates was paid nearly $1.4 million for their work developing “Project Sustainability” and analyzing its fiscal impact between 2010 and 2016, according to state records.

Tuesday’s public meeting will begin at 3 p.m. in the Senate Lounge of the State House. Public comment is invited at the end of the session, according to the commission chairman, State Sen. Louis DiPalma, D-Middletown. The commission includes 19 members from state government and a cross-section of the developmental disability community. Among them are two consumers and representatives of advocacy groups and service providers.

RI Project Sustainability's Plan For Enhanced DD Services Was "Cover" For Budget Cuts - Testimony

By Gina Macris

Louis DiPalma, Chairman of Project Sustainability Commission Photo By Anne PETERS

Project Sustainability, introduced in Rhode Island in 2011 as a method for enhancing individualized services for adults with developmental disabilities, instead has diminished the quality of their lives.

That assessment set the stage Oct. 9 for deliberations of a Senate-sponsored commission charged with studying Rhode Island’s past and present system of developmental disability services, with the aim of designing a better future.

At the same time, the chairman of the 19-member panel, Sen. Louis DiPalma, D-Middletown, emphasized that the purpose of the commission is not to assign blame but to learn from the past and present to figure out how to best move forward. The commission must report to the Senate by March 1.

Project Sustainability was “a well-manicured statement to cover up” cuts in funding and services, said Tom Kane, CEO of AccessPoint RI, one of three dozen private agencies serving adults with developmental disabilities in Rhode Island.

Kim Einloth Testifies

Project Sustainability had a “major impact on the quality of service we were able to deliver,” said Kim Einloth, a senior director at Perspectives Corporation, one of Rhode Island’s largest service providers. She said the community-based program of day services was forced to put people in large groups, lay off specialists like occupational and speech therapists and discontinue consulting services with physical therapists.

Gloria Quinn, executive director of West Bay Residential Services, said she noticed immediately that the disabilities system was “demoralized, decreased and degraded” when she returned to Rhode Island after a nine-year absence in 2013. When Quinn moved out of state in 2004, she said, Rhode Island was one of the top-ranked states nationwide for its programs for adults with developmental disabilities. Quinn sits on the commission.

In a meeting that lasted about 90 minutes, the commission covered a broad range of topics related to Project Sustainability and the controversies linked to it: inadequate overall funding, depressed worker wages, and an assessment used – or misused - to determine individual allocations for services.

The planning and execution of Project Sustainability has been well documented, primarily by Burns & Associates, healthcare consultants hired by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) in 2010.

DiPalma said that from what he’s seen, Burns & Associates was “charged with providing a plan, and the state chose to do something different.”

Rebecca Boss, the current director of BHDDH, reviewed the history of Project Sustainability, designed to bring uniformity to funding for specific services and enable families to make informed choices about services. Project Sustainability aimed to use data gathered through new funding methods to create incentives for services to be delivered in the most integrated setting possible, she said.

“Change is hard, and even with perfect planning, it would not result in everyone’s needs being met,” Boss said.

“I think everyone knows” that the current administration – including Governor Gina Raimondo, Kerri Zanchi, the Director of Developmental Disabilities, herself, “is committed to working with our stakeholders” to figure out “where do we go from here,” said Boss.

“Many may have different views of history, as is often the case,” said Boss, a commission member.

Kane, of AccessPoint, said he didn’t want his anger about Project Sustainability to reflect the way he regards the current administration. The working relationship service providers now have with the BHDDH administration, he said, is “better than we’ve had in a very, very long time.”

Tom Kane Chats After The Commission Meeting

The plans for Project Sustainability “talked about individualizing services and moving toward person-centeredness and all of the lovely buzz words,” said Kane, but the rhetoric really described “a system we already had that got dismantled.”

While Project Sustainability talked about individualization, inclusion and community support, the regulations governing developmental disability services “were always about center-based group activity.”

“Finally, under this administration, the regulations have been put forward that will put back the flexibility we need,” Kane said. The new regulations have passed a public comment period and are to be finalized by the end of the year.

Funding, however, has a long way to go to support the kinds of changes providers, families, and consumers want, by all accounts.

Commission member Andrew McQuaide zeroed in on historical funding of developmental disability services.

McQuaide said that developmental disability spending had been on a downward trend in Rhode Island since 1993.That was the year before the last residents left the Ladd School, the state’s only institution for those with intellectual challenges.

Citing According to Burns & Associates, McQuaide said:

• Between 1993 and 2008, Rhode Island’s expenditures for developmental disabilities decreased by 29.5 percent at the same time the national rate increased by 17.8 percent.

• Rhode Island is only one of 14 states to report a reduction between 2007 and 2009 in per-person expenditure, a decrease of 4 percent at the same time the national trend registered a 5.6 percent increase.

McQuaide also said that anecdotal information indicates about half the state’s private providers were reporting operating deficits in 2009, ill-preparing them to absorb the additional funding cuts that came along with Project Sustainability.

An overview prepared by the Senate Fiscal Office showed that actual spending on developmental disabilities, including both state and federal Medicaid funds, dropped $26.2 million in the fiscal year that began July 1, 2011 when compared to spending during the previous 12 months.

The overview shows that, adjusted for inflation, the current budget still has not caught up to the spending reach of the developmental disability system in the year before Project Sustainability was enacted.

Chart courtesy of RI SENATE FISCAL OFFICE

Prior to Project Sustainability, private agencies negotiated an annual sum for each individual in their care.

The new system generated standard reimbursement rates for each of 18 different services that agencies were authorized to provide.

Kane noted that from the outset, the funding for Project Sustainability was not designed to cover all of the actual costs of private providers, almost all of whom had submitted extensive financial data to the state.

A BHDDH memo for rate-setting that the department sent to the General Assembly noted that the reimbursement rates eventually adopted for Project Sustainability were 17 to 19 percent below “benchmark rates” which Burns & Associates calculated from the median wage for direct care jobs - $13.97 an hour.

The state could not afford more, the memo said, citing the poor economy at the time.

The memo said the lower reimbursement rates were calculated by reducing the allowances for fringe benefits for workers and in some cases, cutting transportation and program expenses.

Kane, who is familiar with the rates in the memo and other Burns & Associates documents, said providers were “actually told in a meeting, ’We’ll see what this (the benchmark wage) costs but we won’t actually bring this to the legislature because they’ll laugh at us.’

“I don’t understand why the expenditure of well over a million dollars on Burns & Associates wasn’t taken seriously enough” to put forward actual expenditures “and let the legislature decide whether it was appropriate,” Kane said.

McQuaide, meanwhile, quoted from the memo. “We did not reduce our assumptions for the level of staffing hours required to serve individuals. In other words, we are forcing the providers to stretch their dollars without compromising the level of services to individuals,” the memo said. See related article

McQuaide said the experience of the last seven years has shown that it was a “fiction” to think the system of private providers would be forced to implement Project Sustainability without compromising services.

The state has a separate system of group homes for adults with developmental disabilities which has not been subject to rules or the pay cuts that came with Project Sustainability. Instead, the workers are unionized state employees with full benefits.

Donna Martin and Andrew McQuaide

In the privately-run system, McQuaide said, the wages paid direct care workers still don’t reach the original $13.97 per hour “benchmark”, or median-pay rate, calculated by Burns & Associates.

The most recent data available indicates that the average entry wage for direct care workers is $11.37 an hour. It comes from a survey of member agencies of the Community Provider Network of Rhode Island (CPNRI) conducted last February, according to Donna Martin, executive director of the trade association, which represents about two thirds of service providers in Rhode Island. Martin said she is in the process of updating the figure.

Martin, a commission member, told the panel that CPNRI has met with the BHDDH leadership and representatives of Governor Raimondo’s office and the Office of Management and Budget to review current provider reimbursements in comparison to an extensive menu of rates envisioned by Burns & Associates in planning Project Sustainability. BHDDH, OMB, and the Governor have already planning a budget proposal for the next fiscal year.

DiPalma said Burns & Associates originally wanted to advance a “competitive” average wage of $15.46 an hour.

Addressing wage inequities will be a critical focus of the commission’s work, he said. Two years ago, DiPalma started a campaign to raise direct care wages to $15 an hour over five budget cycles. Massachusetts already pays its direct care workers a $15 hourly rate, and many Rhode Islanders find they don’t have to move to take advantage of these higher-paying positions at agencies that are an easy commute from their homes, DiPalma said.

Another source of rancor over the last several years has been the assessment used to determine individual funding levels under the terms of Project Sustainability – the Supports Intensity Scale (SIS), which was updated in November, 2016.

Kane has said data compiled by Burns & Associates indicate the original version of the SIS was used to cut individual funding. See related article

A. Anthony Antosh

Even though the SIS has been revised, the state’s top academic researcher in developmental disabilities, A. Anthony Antosh, told the commission that using the SIS as a funding tool violates the original intent of the instrument as an aid for professionals designing individual programs of support for persons with disabilities.

Antosh, a commission member, is the retiring Director of the Sherlock Center on Disabilities at Rhode Island College.

His comments apparently prompted Kane to recall another moment in a Project Sustainability planning meeting in which Burns & Associates’ human services partner praised the multi-faceted assessment providers were using at the time to figure out how much funding a particular person needed. In each case, the assessment took into account intellectual capacity, responses in various situations and potential risks.

That Burns & Associates partner, the Human Services Research Institute of Oregon, wrote a memo to the General Assembly saying that “ ‘resource allocation’ should never be thought of as mostly an exercise involving the assessment and simple service delivery.”

Policy makers should also take into account the goals of the programs, such as increasing community integration or increasing employment, before determining the array of services and rate schedules, HSRI said.

“Data collected by a measure such as the SIS is necessary,” the memo said, “but certainly not sufficient.”

The memo was condensed before it reached the General Assembly, and the recommendation against using the SIS alone to determine individual funding was eliminated,

RI General Assembly Candidates In Newport County Say They Support DD Worker Raises

By Gina Macris

A call for higher pay for direct service workers who assist persons with developmental disabilities ran like a thread through a General Assembly candidates’ forum in Newport Oct. 3, with several speakers saying better wages will help stabilize the system and improve quality.

Legislators urged an audience of about 25 to make their names and faces known at the State House to press this and other concerns when the General Assembly convenes again in January.

State Sen. Louis DiPalma, D-Newport, Middletown, Little Compton and Tiverton, said that Rhode Island cannot transform services for adults with developmental disabilities on a budget that has the same buying power as it did in 2011.

In Fiscal Year 2011, Rhode Island spent about $242 million on developmental disabilities, DiPalma said. Adjusted for inflation, using the consumer price index, that’s equivalent to the $272 million currently budgeted for the state Division of Developmental Disabilities.

DiPalma offered a glimpse of the work ahead for a Senate-sponsored commission that will convene Tuesday, Oct. 9 to begin discussing the current fee-for-service reimbursement system for private providers of supports to adults facing intellectual and developmental challenges.

The reimbursement system, called “Project Sustainability,” was inaugurated in Fiscal Year 2012, along with cuts that slashed spending on developmental disabilities from $242.6 million to $216.5 million, according to state figures.

Since 2014, the state has been under pressure from the U.S. Department of Justice to end an overreliance on sheltered workshops and other segregated care for adults with developmental disabilities, and instead emphasize competitive employment and integrated non-work activities to comply with the Americans With Disabilities Act.

At the Oct. 3 forum, DiPalma said the current practice of awarding individual funding authorizations according to the “level” of a person’s lack of independence is “just wrong” when successful appeals of individual awards have resulted in supplemental expenditures of up to $25 million a year for legitimate additional services on a case-by-case basis.

DiPalma, the chairman of the commission, said the panel will review every aspect of “Project Sustainability - what it is, how did we get there, and where do we want to go? What are the gaps?” The commission will meet at 3:30 p.m. Oct. 9 in Room 313 of the State House.

Rep. Deborah Ruggiero, D-Jamestown and Middletown, who has six years’ experience on the House Finance Committee, said people with disabilities want the exact same thing that people without disabilities seek – meaningful lives.

“But I’m not sure it’s a one-size-fits-all model, “ she said. “The whole system needs a good 20,000-foot overview.”

“It’s not right that people can make more money at McDonald’s than they can supervising people with intellectual and developmental disabilities, “ Ruggiero said.

One consequence of “Project Sustainability” has been double-digit cuts in wages, which also have derailed benefits such as health insurance, and opportunities for career advancement offered workers by private service-provider agencies. The wage cuts destabilized an entire workforce, which now averages a turnover rate of at least 33 percent a year.

Rep. Dennis Canario, D-Portsmouth, Tiverton and Little Compton, himself the father of someone with developmental disabilities, said that people generally “don’t understand the detrimental effect” of staff turnover on the individuals they assist.

Workers must have “expertise” to keep their clients on an even keel, particularly in some cases where clients are “very involved,” He said that It takes “expertise to turn situations around” or to keep individuals focused on the job at hand.

“When they get up in the morning, they need something to look forward to,” he said of people with disabilities. “We need to provide that type of day to our friends with intellectual and developmental disabilities. Together we can come up with the answers and solutions.”

“Pay inequity is a serious problem,” Canario said. “You’re not going to attract someone highly qualified” for $11 an hour,” he said. (The average pay for direct support workers is slightly less than $11.50 an hour.)

Connecticut and Massachusetts “are way ahead of us,” he said.

DiPalma noted that Massachusetts has already negotiated a minimum $15 hourly wage for direct care workers who are members of the Service Employees International Union. Many of the workers in nearby Massachusetts towns have trained in Rhode Island and still live in Rhode Island, he said.

DiPalma has sponsored a campaign to get a $15 hourly wage in five years, but it stalled in the last session of the General Assembly, when the developmental disability system was threatened with an $18 million cut in services. In the end, the legislature restored the status quo, but no gains were made.

Nevertheless, advocates deserve a “great round of applause for restoring that funding,” said Sen. Dawn Euer, D-Jamestown and Newport. She and others, including Rep. Kenneth Mendonca, R-Portsmouth and Middletown, urged them to keep it up.

Sen. James Seveney, D-Portsmouth, Bristol and Tiverton, signaled that he and his colleagues will again be pushing for a wage increase for direct care workers in the 2019 General Assembly session.

With the 2014 federal consent decree driving more integrated employment and community –based activities, the state must invest in additional transportation to make those opportunities a reality, said Euer. Others echoed her concern about transportation.

Terri Cortvriend, the Democratic candidate for Mendonca’s seat in the House, said she wanted to learn more about developmental disability services, particularly whether individuals and families are satisfied with the greater emphasis on competitive employment. Cortvriend currently chairs the Portsmouth School Committee.

Susan Vandal, a member of the audience, said families who have a child with a developmental disability want a system that allows them a “single point of entry” that begins early intervention for infants and toddlers and takes them seamlessly through the school years into adult services.

Parents must now jump through too many hoops, particularly in the transition from school to adult services, she said. Transition from high school to the adult system is also one of the prime concerns of an independent court monitor overseeing implementation of the consent decree.

Addressing the audience, Canario said legislators “need your help so we can make recommendations on how to fix a broken system.”

“A lot of parents are in the dark and don’t know what to do,” he said. Sometimes they are misled, with plans for services that are on paper but don’t become reality.”

The forum held at the Newport campus of the Community College of Rhode Island, was sponsored by the Newport County Parents Advocacy Group and Rhode Island FORCE (Families Organized for Reform, Change, and Empowerment.) RI FORCE streamed the event live and has posted the recording on its Facebook page, here.

DD Advocates Plan Candidates' Forum Oct. 3

By Gina Macris

Two advocacy groups for Rhode Islanders with developmental disabilities will sponsor a legislative forum Wednesday, Oct. 3 at the Newport campus of the Community College of Rhode Island.  

As of Sept. 28, seven candidates, including four state senators , two state representatives and one challenger, had confirmed their attendance, according to a spokesman for Rhode Island FORCE and the Newport County Parents Advocacy Group.  

The seven candidates are: Sen. Louis DiPalma, D-Middletown, Newport, Little Compton, and Tiverton; Sen. James Seveney, D-Portsmouth, Bristol, and Tiverton; Sen. Dawn Euer, D-Newport and Jamestown; and  Sen. Deborah Ruggiero, D-Jamestown and Middletown.  

The candidates for state representative are: Rep. Dennis Canario, D-Portsmouth, Tiverton, and Little Compton; Rep. Kenneth J. Mendonca, R-Portsmouth and Middletown;  and Mendonca’s Democratic challenger, Terri Cortvriend, who chairs the Portsmouth School Committee.  

Christopher Semonelli, spokesman for the two advocacy groups, said the forum will run from 5 to 7 p.m. RI FORCE, which stands for Families Organized For Reform, Change, and Empowerment, plans to stream the session live on its Facebook page here.  

For an hour prior to the session, various organizations will hold an information fair geared to families supporting those with intellectual and developmental disabilities.  

Semonelli said anyone planning to attend is asked to sign up at Eventbrite. 

RI Project Sustainability Study Commission To Meet October 9 For First Session

By Gina Macris

A special Commission of the Rhode Island Senate will hold its first meeting Tuesday, Oct. 9 to begin studying the impact of “Project Sustainability” on services for adults with developmental disabilities, its chairman, Sen. Louis DiPalma, D-Middletown, has announced. The meeting is open to the public.

Project Sustainability is the name of the fee-for-service reimbursement system for Medicaid-funded supports for adults with intellectual challenges that was enacted by the General Assembly in 2011. 

The system features a standardized assessment of each client’s needs which is then translated by an algorithm into one of five levels of individual funding.  It was introduced as a more equitable way of allocating funds than the previous method, in which providers negotiated flat rates for each client in their care. 

But Project Sustainability, which was accompanied by significant budget cuts, has been controversial from the start. The state first calculated a myriad of distinct reimbursement rates based on existing median wages for direct care workers. From there it slashed the rates an average of 17 percent in the budget for the 2011-2012 fiscal year, citing a poor economy.   

Providers were forced to cut wages drastically, leading to an instability in the workforce that persists today. Advocates say the high turnover prevents the state from achieving the goals of a 2014 federal civil rights decree that followed in the wake of Project Sustainability.

The U.S. Department of Justice criticized the state for incentivizing segregated care in day centers or sheltered workshops that can be managed with a minimum of staff. An over-reliance on this type of care violates the integration mandate of the Americans With Disabilities Act, the DOJ found.  

DiPalma, the commission chairman, said the 19-member commission includes two consumers, other advocates, providers and representatives of the executive branch of state government. The commission will accept public comment at every meeting, he said.

The first meeting will cover the history of Project Sustainability and spell out the goals of the commission, according to a statement issued in DiPalma’s behalf. The meeting will begin at 3:30 p.m. Oct. 9 at the State House, but the room has not yet been selected, DiPalma said.

Artist And Others Who Rely On State-Funded Support Speak Up For What Matters To Them

By Gina Macris

Most people don’t  give a second thought to what it takes to meet a friend for coffee or a shopping foray. They just call or text and go. 

But for Wendy LeBeau, a Rhode Islander living with the challenges of developmental disabilities, arranging a casual get-together is a big deal. She’d have to get someone to drive, not so easy when her schedule of state-funded supports allows limited time for one-on-one service.

 On Aug. 7, LeBeau joined some 50 people at an event space next to The BRASS in Warren– an art gallery where she works – for the first of several  “Community Conversations” sponsored by the Community Provider Network of Rhode Island, a trade association of private service providers that support adults with developmental and intellectual challenges.

When LeBeau was asked about her ability to connect with friends, she replied “only at work.”  She is a contributing artist at The BRASS, where she has created abstract canvases of dancing, swishing color. 

The work of LeBeau, which features a carefully chosen palette and controlled style that belies the flowing compositions, has been shown at the National Portrait Gallery at the Smithsonian Institute and an annual Art Ability exhibit at Bryn Mawr Rehab Hospital in Philadelphia.

LeBeau’s comments, as well as those of others, put a face on what it means to depend on others to arrange even a simple outing.  

The remarks responded to questions posed by Donna Martin, executive director of CPNRI, who made her way around the audience, asking individuals seated in a huge circle of chairs to share their experiences, including any barriers they faced to feeling included in their communities.

In various ways, LeBeau and others pointed to a common underlying theme – a shortage of qualified staff available to individualize services so that adults with developmental disabilities may access their communities for work and leisure, as envisioned by the Americans With Disabilities Act. 

Margaret, who uses a wheelchair, said as much: “We need more staff.”  

Since a $26 million funding cut by the General Assembly forced private service providers to slash wages in 2011, the field has been plagued by high turnover and difficulty among employers in recruiting and retaining new staff.  At the same time, a federal consent decree in effect since 2014 requires more training and professionalism in the way adults with developmental disabilities receive support services. 

Since 2011, there have been a few incremental wage increases, but the field of direct care has not recovered. 

Martin puts the current average pay for direct service workers at about $11.45 an hour.  That’s $1.30 above the minimum wage of $10.10. Rhode Island’s minimum wage is set to increase to $10.50 January 1, 2019, but the pay for those who work with adults with developmental disabilities will remain the same. 

Darlene Faust, Director of Self-Advocacy and Work Preparedness at Looking Upwards, cited the labor shortage and a lack of adequate transportation as barriers to inclusion.

She said her agency recently lost a staff member to Walmart.

After the meeting, Faust elaborated on the staffing situation. When workers call in sick, she said, she and others in management often must fill in to provide direct support, because the back-up pool is so small.

And when the agency is short-staffed, trips into the community must be prioritized. Clients must get to their doctors’ appointments and to their jobs no matter what, she said. 

Faust has worked with adults with developmental disabilities for 20 years, she said, because “I love it.”

But the struggles are “heartbreaking right now,” she said. “We’re all in it together. It’s all the same community, whether you’re providing service or receiving support.”

“People outside the community don’t always understand,” she said.

A number of people who spoke in American Sign Language said that a lack of interpreters posed barriers in various areas of daily living, including their ability to find jobs.

Meanwhile, a Woonsocket man who called himself Tim said he is 28 and has been looking for work since he was in high school.

Although several  prominent  corporate employers  have taken the lead in hiring adults with developmental disabilities in Rhode Island, Tim said he believes there is still “a lot of prejudice out there” against taking on workers who face intellectual or developmental challenges. 

He said it would be helpful if agencies providing employment supports could offer “task-oriented vocational training” to job seekers before they actually apply for a particular position.

The “community conversation” is the first of five such meetings planned by CPNRI in the coming months to cultivate and encourage sustained grass-roots advocacy on issues affecting anyone with a stake in services for adults with developmental disabilities, Martin said after the meeting.

The schedule for the remaining conversations, in different areas of the state, is still being finalized, she said.

CPNRI also plans candidate forums for legislative and gubernatorial candidates after the September primary elections, Martin said.

In a show of hands, about two thirds of the audience indicated they were registered to vote, including most of those who receive services funded by the state.

RI House Finance Committee Recommends Restoring DD Services To Current Levels

By Gina Macris

RI HOUSE SPEAKER Nicholas A. Mattiello  

In a midnight session June 8, the Rhode Island House Finance Committee added nearly $18 million to Governor Gina Raimondo’s original budget proposal for developmental disabilities in the fiscal year beginning July 1.

Both the House and Senate leadership and the governor herself supported increased funding for developmental disabilities after better-than-expected revenue projections were announced May 10.

The additional funding, all Medicaid money, includes about $8.8 million in state revenue and the remainder from federal funds, according to documents prepared by the House fiscal staff. The Finance Committee’s budget raised Raimondo’s bottom line for developmental disabilities from $250.8 million to $271.4 million. The state’s share would be $126.3 million.

Raimondo’s original budget would not have allowed the state to continue to implement a 2014 federal consent decree designed to correct violations of the Americans With Disabilities Act, according to an independent court monitor, who had been prepared to make recommendations to the judge in the case to ensure adequate funding.

The overall $9.55 billion statewide package passed the House Finance Committee, mostly along party lines without debate, on a vote of 15-3. Opposed were Republicans Patricia Morgan, a gubernatorial candidate representing West Warwick, Warwick, and Coventry,  Antonio Giarrusso, representing East Greenwich and West Greenwich, and Robert Quattrocchi, representing Scituate and Cranston.

The measure is slated to go before the full house June 15, and Chairman Marvin Abney-D-Newport, said there would be plenty of debate on the House floor.

 As it now stands, the budget maintains the level of developmental disability services at current reimbursement rates to private providers. The Finance Committee did not reverse a $3 million cut to the state-run group home system imposed by the Governor, and it does not improve wages for direct care workers, as has been the practice in the last three budgets.

Direct care workers in developmental disability services make significantly less than their counterparts in Massachusetts and Connecticut.

Providers say they struggle to recruit, train and keep qualified employees, who often go to neighboring states or leave the field entirely. 

In a briefing with reporters before the Finance Committee convened, House Speaker Nicholas A. Mattiello said the budget did not go further in addressing needs of the Division of Developmental Disabilities because of the necessity to restore funding in many human service areas.

“We were thinking of all segments of society and balanced it as well as we can,” he said. “We took care of our economy, and we took care of our citizens.”

The Finance Committee added $15.7 million payments for hospitals and another $17.2 million to the Department of Children, Youth and Families for services for children and teenagers in state care. Some of the added DCYF funding would provide for older teens who choose to receive services until age 21 – an option that has been unavailable in recent years.

The House Finance Committee also granted a 10 percent rate hike to in-home caregivers of the elderly and disabled. Most of the individuals served by those workers do not have developmental disabilities, according to Sharon Reynolds Ferland, the House Fiscal Advisor. But Mattiello said there are significant savings to the state in keeping those individuals out of nursing homes.

The revised budget also reversed Raimondo’s plan to require Medicaid patients to shoulder co-pays for health care, although the original proposal was not designed to affect individuals with disabilities.

Just as the Finance Committee increased Medicaid reimbursement rates to hospitals to make them competitive with Massachusetts and Connecticut, Mattiello said, he believes wages for direct care workers probably should be raised to keep them in Rhode Island.

“Yes, I do believe we have to look at those rates,” he said in response to a question about the wages. He said direct care wages “should probably be increased but there’s so much resources, and when you run out, you run out.”

Mattiello held out the hope that direct care worker wages in developmental disabilities would be revisited next year.

He said he wants to continue to increase resources for developmental disabilities, “but that increase is incremental and slower than we would like.”

“We’re continuing to work on improving our economy so we can continue to work on the needs of society and balance those needs,” Mattiello said.

While the House leadership usually drives the budget, the Senate will weigh in after the package clears the lower chamber.