RI “Not Far” From Institutional System Of DD Services, Antosh Tells Legislative Commission

A. Anthony Antosh

A. Anthony Antosh

By Gina Macris

Other than moving people out of institutional living with the closing of the Ladd School in 1994, Rhode Island hasn’t made life appreciably better for adults with developmental disabilities, according to state’s most prominent academic in the field.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said that every week he gets calls from parents who say how “complicated it has gotten” to deal with state-funded services and “how unstable the system is.”

“Our system is not institutional, but it’s not far from that,” Antosh said. He has been active as an educator and researcher in the field of developmental disabilities since the 1970s and was a plaintiff in a lawsuit that ultimately closed the Ladd School.

If the state transfers control of its services – even partially -- to the people who are served, “you begin to change what the system looks like,” he said. Individuals will become “more responsible for themselves.”

Antosh made the comments May 22 as a member of the Project Sustainability Commission, a special legislative commission studying the current state of developmental disability services. Antosh and other commissioners outlined their reform suggestions at the session.

He zeroed in on a requirement now in place that sets out ratios for staffing according to the degree to which a person is perceived to be disabled – a “naive notion” in his view. The ratios allow one-to-one or small group staffing only for the most challenged individuals and were designed for day care facilities or sheltered workshops.

The funding rule remains in place even though the state in April entered the sixth year of a ten-year agreement with the U.S. Department of Justice requiring it to change to an integrated, community-based system of care. The last sheltered workshop in Rhode Island closed last year.

Antosh said an alternative structure could be a community support team responsible for a certain number of people. The team would figure out how to arrange its time to meet the individual needs of its clients in the community.

DD Council Weighs In

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, also said that he wanted a system “driven by the person and the family.”

There is much talk about “person-centered planning,” he said, but “sometimes, the person is at the center and the other people are doing the planning.”

Nerney recommended that the person receiving services and the family take the lead in drawing up a plan for life in the community. They would be guided by an independent facilitator, not by someone who works for the state funding agency or a private service provider.

The individual and the family would have control over the budget assigned to them and would be able to hire whom they choose to provide paid supports.

Until recently, Nerney said, individuals and families who direct their own services were allowed to use the money allotted to them only to pay for support workers.

Those who choose to receive services from an agency should at least know how much money goes into each category of support, Nerney said.

Antosh, meanwhile, said that funding should be organized by function so that individuals and families have a clearer idea of its purpose.

The notion that plan-making and case management should be separated from the funding agency and the service provider is already embedded in federal Medicaid rules under the title of “conflict free case management.”

“Health Home” Merits Debated

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) wants to set up a Medicaid-funded “Health Home” as an independent planning and case management entity for persons with developmental disabilities.

But some commission members have wondered aloud whether a Health Home would be just another layer of bureaucracy.

And Nerney said most people don’t even like the term “conflict-free case management.”

Antosh agreed that “conflict-free case management” should be made simple. The state should have a list of trained independent facilitators, or “navigators,” as he referred to them, to help individuals and families develop plans and mediate any differences among those contributing to an individual plan.

Individuals and families should have a choice of managing their own services, signing up with an agency, or designing a customized combination of self-directed supports and agency-managed services, he said.

Tom Kane, Left, With Antosh

Tom Kane, Left, With Antosh

Tom Kane, who represented a service provider’s perspective, agreed that the people should be in control, with the services following their needs.

To lay the groundwork for real choice, the system should help adults with developmental disabilities “discover their options,” and providers should follow their lead in delivering services, said Kane, CEO of AccessPoint RI.

Kane recommended a concerted statewide marketing campaign aimed at employers that promotes adults with developmental disabilities as an enthusiastic and reliable workforce.

Several other recommendations from Kane echoed recurring issues among members of the commission including:

  • A need for funding that reflects the real costs of services, as well as salaries that will attract and retain talented employees. Recommendations that arise from the review of the funding model and rates that is now underway should be presented to the General Assembly “without edit,” Kane said, and should be used as the basis of funding a new system. He noted that the last review came up with recommendations which the legislature never used.

  • Concerns about a lack of housing options

  • A need for consumers’ access to technology to help them achieve the greatest independence possible.

A Call For A More Stable Funding Cycle

All the commission members, except Antosh, favor annualized budgets for individuals. Antosh said arrangements should be made in two-year increments for funding and services. He also said that there should be a single streamlined application process, no matter the source of the funding, which may come from BHDDH, the Office of Rehabilitative Services, or the Department of Labor and Training.

Families of youngsters deemed eligible for adult services while they are still in high school should also get a budget for exploratory activities, because they don’t know what choices are possible until they experience various options, he said.

The state now determines funding levels annually on paper but reserves the right to change the amount actually released for spending every three months – on a quarterly basis. Families and providers agree that the quarterly allocation - the only one like it in the nation – is a major impediment to the systematic planning necessary for a stable system of supports.

Kane provided some history on the quarterly allocations:

In 2010, he said, payments to private service providers ran over budget and the state told them their reimbursements would be cut for two months – one month retroactively – to make up the difference.

Some providers sued, Kane said, arguing that the state was still obliged to fulfill its contract with them. The providers won, but the next year, in 2011, BHDDH introduced quarterly allocations along with Project Sustainability, the fee-for-service system that significantly reduced reimbursements and is at the center of the commission’s deliberations.

Mental Health Services Lag

The issue of mental health received considerable attention, with Nerney recommending that the system develop and implement a variety of strategies to prevent crises or resolve them once they occur.

Nerney supported the idea of a mobile crisis unit that he said was suggested by Gloria Quinn, Executive Director of West Bay Residential Services, at the previous commission meeting May 6.

Quinn recommended convening a group to explore successful practices in supporting those with complex mental health and behavioral needs in the community, minimizing the need for excessive psychiatric hospitalization.

Rebecca Boss, the BHDDH executive director, and Kerri Zanchi, the Director of the Division of Developmental Disabilities, both indicated they are aware of a need for greater support and intervention in the area of behavioral health for persons with developmental disabilities.

“We don’t have a good handle on the needs of families in crisis,” Zanchi said.

The assessment tool that BHDDH uses to determine funding levels, the Supports Intensity Scale (SIS), garnered a new round of criticism, despite efforts in 2016 to reframe the questions it asks to better identify support needs and the re-training of all the social workers who conduct the highly scripted interviews..

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

Critic Says Assessment Method Is “Demeaning”

Peter Quattromani, executive director of United Cerebral Palsy RI and spokesman for the Providers Council, said the state should return to using the Personal Capacity Inventory to identify funding needs because it reflects a more collaborative approach than the SIS.

Quattromani said he sat in on several SIS interviews and found the SIS to be a “very demeaning experience” with “very intrusive questions.” In some cases the interview varied, depending on who was asking the questions, he said.

Antosh said when parents experience the SIS for the first time, “they are absolutely horrified by it.”

He suggested that when the SIS was first piloted, it was not intrusive. It was “a conversation”, albeit a lengthy one, lasting for or five hours, Antosh said. Afterward the responses were correlated with funding needs.

Antosh said the SIS was designed to help professionals develop support plans, not as a funding tool, even though Rhode Island and other states use it that way.

Antosh said he would recommend that Rhode Island design its own assessment tool, not necessarily eliminating the SIS but using multiple factors to determine funding, including an exploration of behavioral health issues and other areas not covered in the SIS.

Heather Mincey, assistant director of the Division of Developmental Disabilities, said not all the comments abut the SIS process she has received from families have been negative, with some parents saying it “wasn’t all that bad.”

The May 22 meeting concluded individual members’ presentations on recommendations for change, which will be reviewed and consolidated along common themes and incorporated into a plan for moving forward, said the Commission chairman, Sen. Louis DiPalma, D-Middletown.

He said he anticipated a five-year process for implementation, with the aim of making Rhode Island achieve top national ranking among state systems of developmental disability services.

In the meantime, DiPalma said that he next commission meeting, on June 18, will feature remarks by the state Director of Labor and Training, Scott R. Jensen; and the CEO of the Rhode Island Public Transit Authority, Scott Avedesian Employment and transportation are two topics that have sparked a lot of complaints, DiPalma said. He said he expects the commission to continue meeting into July.

"Project Sustainability” Commission To Continue Hearing Members’ Recommendations May 22

By Gina Macris

Members of a special legislative commission studying Rhode Island’s funding of services for adults with developmental disabilities are expected to finish presenting their recommendations for change at the commission’s next meeting Wednesday, May 22, according to the chairman, Sen. Louis DiPalma.

The recommendations which have been aired coalesce around a vision of a future in which adults with developmental disabilities get the supports they need to live where they want, find a job, and do what they want in their spare time, just like anyone else, in keeping with the integration mandate of the Americans With Disabilities Act. That mandate is reflected both in the Medicaid Home and Community Based Rule (HCBS) and the 2014 federal consent decree between the state and the U.S. Department of Justice.

To realize an inclusive future, it is critical that the state adopt an alternative to the current fee-for-service funding model, which poses “challenges and barriers” for the for the privately-run system of developmental disability services, DiPalma said.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has begun a review of the rates and the rate model for paying private providers and invites public comment by email at this address: BHDDH.AskDD@bhddh.ri.gov (Please copy and paste the email address.)

DiPalma said commission members have submitted comments on the rate review to BHDDH. In addition, the recommendations aired so far have sounded some common themes, including a need for better transportation and a desire for a seamless bureaucracy that can meet the needs of individuals at all stages of life, DiPalma said.

The transition between special education services in high school and the adult service system has been compared to “falling off a cliff” by many parents, according to anecdotal reports to the commission.

DiPalma said he will ask RIPTA, the Rhode Island Public Transit Authority, and the Department of Labor and Training to become directly involved in efforts to redesign the developmental disabilities service system. The consent decree, which resulted in the elimination of sheltered workshops in Rhode Island, calls on the state to increase supports to adults with developmental disabilities seeking jobs in the community.

The May 22 commission meeting will begin at 2 p.m. in the Senate Lounge at the State House.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Among the needs discussed May 6 are funding for:

  • training and career paths for staffers

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

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

  • Better access to affordable housing

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

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

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

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

RI BHDDH Wants Consultants' Comprehensive ‘Best Strategies’ For Integrated DD System

By Gina Macris

The most recent meeting of Rhode Island’s “Project Sustainability” commission Aoril 25 left members surprised by news that an outside review of Rhode Island’s rates and reimbursement methods for private providers of developmental disability services will not conclude with consultants making dollars-and-cents recommendations for a new scale of payments.

In a follow-up question, Developmental Disability News asked officials of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to elaborate on the reasons for the approach it has taken in commissioning the outside review, which is intended to help the state meet the requirements of a 2014 federal civil rights decree..

In a statement, a spokesman said the department is looking for the “best strategies” for developing and paying for an “integrated and individualized system of services” - characteristics which would comply with the consent decree.

That decree draws on the authority of the U.S. Supreme Court’s Olmstead decision, which reinforced the integration mandate of the Americans With Disabilities Act.

The existing reimbursement system for private agencies led to over-reliance on facility-based care and sheltered workshop employment, in violation of the integration mandate, according to findings of the U.S. Department of Justice, which laid the groundwork for the consent decree. The fee-for-service reimbursement system, called Project Sustainability, resulted to significant pay cuts for direct care workers, high turnover and a high rate of job vacancy.

“Determining how to stabilize the workforce and what to pay direct care workers is a broad question that touches on many moving parts,” said Randal Edgar, the BHDDH spokesman.

The salary of workers, called “direct support professionals,” is an important part of the rate structure, but there are other costs which are “vital to a provider’s enhanced functioning,” Edgar said. He listed these costs:

  • employee benefits

  • training

  • supervision

  • management capacity

  • information technology

  • connection and liaison with community

“Asking the consultants to determine just one of the vital elements would not meet the overall financial needs of the Rhode Island Developmental Disabilities system. We are looking for the consultant to identify best strategies for providing an integrated and individualized system of services and help us develop best strategies to pay for that system. But we do not think it is the consultant’s job to say what direct care workers should be paid,” Edgar said.

Anyone who has questions about the rate review may submit them to BHDDH.AskDD@bhddh.ri.gov, Edgar said. (Please copy and paste the email address.)

Meanwhile, the special legislative commission studying Project Sustainability will meet Monday at 2 p.m. in the Senate Lounge of the State House, according to its chairman, Sen. Louis DiPalma, D-Middletown.

DiPalma said the session will focus on members’ recommendations for changes to better enable adults with developmental disabilities to live the lives they want with the supports they need.

NESCSO Review of RI DD Reimbursement Won’t Generate Specific New Rate Recommendations

By Gina Macris

Elena Nicolella and Rick Jacobson All Photos By Anne Peters

Elena Nicolella and Rick Jacobson All Photos By Anne Peters

The non-profit consortium hired to review the reimbursements Rhode Island pays private agencies serving adults with developmental disabilities will not produce a new set of recommended rates, its executive director said April 25.

Rather, consultants supervised by the consortium will review the impact of the existing system and present facts and data that will enable the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to make more informed policy decisions, based on available funding and other factors, said Elena Nicolella. She is executive director of NESCSO, the New England States Consortium Systems Organization.

Nicolella addressed a special legislative commission studying the current fee-for-service rate structure, called Project Sustainability.

DiPalma and Kelly Donovan, A Consumer Advocate

DiPalma and Kelly Donovan, A Consumer Advocate

For more than an hour, the commission chairman, Sen. Louis DiPalma, D-Middletown, and other members of the panel peppered Nicolella and consultant Rick Jacobson with questions as they struggled to come up with a clearer idea of what NESCSO’s recommendations might look like.

The pair, aided by BHDDH officials, did flesh out the picture somewhat. But DiPalma, said Nicolella will be invited back in June to give an update on the work, which is underway.

“We will not be issuing recommendations on specific rates,” Nicolella said, explaining that is not within the scope of the work outlined in the contract between NESCSO and BHDDH.

The work will assess current rates quantitatively and qualitatively and analyze “the impact of the rate structure and payment methodology on people receiving services and the provider agencies and make recommendations for the future,” Nicolella said.

NESCSO will develop scenarios or “roadmaps” of what it would take for the state to achieve certain goals, putting the priority on the state’s obligation to meet the requirements of a 2014 civil rights consent decree with the federal government. That means the work will focus on day services and employment supports, at least initially, Nicolella said.

Some of the recommendations, however, will have implications for the entire system of services, she said.

Boss at 4-25 meeting edited.jpg

Rebecca Boss, the BHDDH director, gave an example of one system-wide priority – creating a stable workforce.

She was asked after the meeting why BHDDH structured the work the way it did.

Boss reiterated that NESCSO would present “facts and data” in an analysis based on certain assumptions. She and Nicolella said the policy decisions would be up to BHDDH.

“If the decisions we make (at BHDDH) don’t meet expectations, it will be out there,” Boss said, emphasizing that the work will be transparent.

The assumption at the heart of Project Sustainability was that providers could do the same work with less money. A former BHDDH administration relayed that assumption to the General Assembly in an unsigned memo that contained a slew of reimbursement rate reductions that formed the basis for cuts enacted in 2011 to inaugurate Project Sustainability. The reductions averaged 17 percent.

Boss said “that’s not the kind of assumption we’re talking about.” Instead, the assumption for one analysis might be that industry-wide, providers should have health insurance for their employees, Boss said. Another assumption might be the amount it costs providers to cover employee-related overhead, she said.

In a separate conversation outside the meeting, Nicolella said the recommendations would be “driven by the data” and “not limited by the by the state budget.”

At the same time, NESCSO will “stop short of what was recommended last time,” she said, alluding to the specificity of rates proposed by Burns & Associates, healthcare consultants who worked on Project Sustainability.

In 2011, Burns & Associates recommended rates that would have paid entry-level workers nearly $14 an hour, but after the General Assembly cut $26 million from developmental disability funding, many workers ended up at minimum wage.

Since then, wages have increased only incrementally, resulting in high turnover and job vacancy. Providers say the reimbursement rates do not cover their actual employee-related costs, like payroll taxes, health insurance, and the like.

During the meeting, Nicolella assured a spokeswoman for providers that the rate review will look at the agencies’ figures. At least one agency, Spurwink RI, has laid out its gap in dollars and cents several times before the House Finance Committee.

At the commission meeting, Spurwink’s executive director, Regina Hayes, asked Nicolella and Jacobson whether the review would pay attention to compatibility with current law.

For example, she said, the Affordable Care Act requires employers to pay health insurance for workers who put in at least 30 hours a week. But Project Sustainability assumes that only those working 40 hours a week are entitled to health insurance, Hayes said.

Nicolella responded, “That’s exactly the kind of information we should be hearing right now, because it’s extremely helpful.”

She and Jacobson both said the assessment of the impact of the current system will include engagement with consumers and families,as well as providers. But neither of them could lay out a schedule or format for that type of engagement.

NESCSO is required to produce a series of reports for BHDDH between June and December, she said. It is the consortium’s intent to complete the work in time for BHDDH to make its budget request for the fiscal year beginning July 1, 2020, Nicolella said.

Nicolella explained that NESCSO’s only mission is to serve the New England states as they seek to research issues and solve problems in the fields of health and human services.

“We are not a consulting company. We don’t sell our services,” she said.

In this case, NESCSO is overseeing four outside consultants, including Jacobson, who are doing the actual work.

NESCSO’s board of directors includes health and human services officials from five of the six New England states, according to its website. Only Maine is not listed as a member.

Nicolella said Rhode Island’s designated board member is Patrick Tigue, the Medicaid director. (Nicolella herself is a former Rhode Island Medicaid director.)

The consortium’s two sources of revenue are state dues and proceeds from a national conference. The BHDDH review is a member benefit, Nicolella said. The contract encompasses not only the work on developmental disabilities but a review of rates for behavioral healthcare services and a model for outpatient services for patients of Eleanor Slater Hospital. But the state still must pay for the consultants’ work - $1.3 million over an 18-month period.

Ongoing RI DD Rate Review To Be Aired Thursday At Project Sustainability Commission Meeting

By Gina Macris

Elena Nicolella, executive director of a non-profit consortium overseeing a review of the rates Rhode Island pays private providers for services to adults wlth developmental disabilities, will address the Project Sustainability Commission Thursday, April 25.

Sen. Louis DiPalma, D-Middletown, the commission chairman, said Nicolella will explain the scope of the work, the timetable, and the documentation that is required under the terms of the consortium’s contract with the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Nicolella is executive director of the New England States Consortium Systems Organization (NESCSO), a non-profit collaboration involving five of the six New England states that aims to promote policies and programs that will serve the needs of the region in a cost-effective manner, according to its website. Only Maine does not belong to the regional group.

DiPalma said he expects that “everything will be on the table” about Project Sustainability, the fee-for-service payment system which providers say hamstrings their ability to offer integrated services in the community as required by a 2014 federal consent decree.

Project Sustainability, enacted by the General Assembly in 2011, forced providers to cut workers’ pay to minimum wage levels, wiping out established career ladders that helped bring continuity to the care of adults with developmental disabilities.

In November, Mark Podrazik, the consultant who advised the state in planning Project Sustainability, told DiPalma’s commission that reimbursement rates should be reviewed every five years.

Thursday’s Project Sustainability Commission meeting featuring Nicolella will begin at 2 p.m. in the Senate Lounge at the State House, according to DiPalma.

NESCSO has a $1.3 million contract with BHDDH over an 18-month period to review private provider rates for developmental disabilities and behavioral healthcare service. The contract also calls on NESCSO to provide technical assistance in connection with creating out-patient services for patients of Eleanor Slater Hospital.

The work in developmental disabilities represents about $700,000 of that total, according to a BHDDH spokeswoman.

RI Consent Decree Coordinator, Tina Spears, To Lead CPNRI, Private Provider Trade Association

Tina Spears * Photo Courtesy CPNRI

Tina Spears * Photo Courtesy CPNRI

By Gina Macris

Tina Spears, who for 16 months has served as Rhode Island’s coordinator for state compliance with a 2014 federal civil rights consent decree affecting adults with developmental disabilities, has resigned to accept a position as executive director of the Community Provider Network of Rhode Island (CPNRI).

Spears’ last day at the Executive Office of Health and Human Services will be Friday, April 12, according to EOHHS spokesman David Levesque.

Spears has broad experience with issues involving developmental disabilities as a parent, advocate and policy maker, emphasizing the importance of the “consumer voice” throughout all her work, according to a statement from a CPNRI spokesman.

Before joining EOHHS as the state’s consent decree coordinator – a position required by the 2014 agreement between the state and the U.S. Department of Justice - she worked as a fiscal analyst for the state Senate, specializing in human service issues.

Spears also has provided direct support for families as a former government relations director of the Rhode Island Parent Information Network.

CPNRI Board members “were pleased to choose Tina from a pool of highly qualified applicants due to her significant experience advocating for people with disabilities and having worked effectively inside and outside state government,” the Board president, Gloria Quinn, said in a statement.

“We are excited to work with Tina as she leads CPNRI through a pivotal moment” in the transformation of the state’s privately-run service system for adults facing intellectual and developmental challenges, said Quinn. She is executive director of West Bay Residential Services, one of 22 private service agencies that make up CPNRI.

Quinn said members of CPNRI “are confident she will take our association to its next level of impact,” resulting in an improved quality of life for adults with developmental disabilities in Rhode Island.

Spears succeeds Donna Martin, who had served as CPNRI’s executive director from 2005 until March 1.

“The state thanks Tina for her commendable service” as consent decree coordinator, “and we look forward to working with Tina in her new position,” Levesque, the EOHHS spokesman, said in a statement.

Brian Gosselin, the chief strategy officer at EOHHS, will serve as the interim consent decree coordinator while the state searches for a permanent successor to Spears, Levesque said. It will be Gosselin’s second stint as interim coordinator.

“The state values the critical role the consent decree coordinator plays in the success of compliance activities of state agencies” in connection to the consent decree, Levesque said.

Counting Gosselin, there have been five consent decree coordinators since the agreement was signed April 8, 2014 and went into effect the following day.

Advocates: RI Must Put Higher Value On DD Workforce To Ensure Stability In Client Services

Image courtesy of RI Capitol TV

Image courtesy of RI Capitol TV

By Gina Macris

The incremental pay increase that Rhode Island Governor Gina Raimondo proposes for those who care for adults with developmental disabilities- about 34 to 41 cents an hour - is “much appreciated,” Tom Kane, CEO of AccessPoint RI, told the House Finance Committee recently.

But “it’s not enough,” Kane added quickly.

Entry-level workers making an average of $11.44 an hour, or more experienced colleagues paid an average of $12.50 an hour, are “often helping a person eat, shower, use the bathroom, or they could be helping someone learn how to drive their car,” Kane said.

“It is a completely and utterly important job, but based on the funding available, it is not really valued by our state,” Kane continued.

“ I’ve said this in this room a number of times. A budget is a statement of values, and what we’re saying is that this work isn’t worth enough money to make a living.”

To illustrate his point, Kane told Finance Committee members that he searched for jobs on the website Indeed.com to prepare for his testimony March 13 and found a posting from a kennel seeking someone to clean cages for $14 an hour.

“Not that I would disparage any job that anyone would have,” Kane said. “I think there should be dignity in all work. I think as a society we have to say, for those who care and support the people to live in the community, to try to have the best life possible, we need to fund the agencies to pay a reasonable rate.”

Kane spoke from the perspective of some three dozen private service providers in Rhode Island, the core of the state’s developmental disability service system. These agencies are trying to make ends meet while dealing with high job turnover and high vacancy rates, as well as the costly overtime it requires to ensure the safety of the vulnerable people in their care.

In the context of the state’s fee-for-service Medicaid reimbursement system, now in its eighth year, the concerns of the providers converge with those of a 2014 federal consent decree which spells out the civil rights of people who, through an accident of birth, spend a lifetime trying each day to rise to the challenge of diverse disabilities.

And in the past year, there has been growing pressure for change, both from those overseeing the implementation of the consent decree and from an expanding chorus of advocates.

In a “Week of Action” planned by the Community Provider Network of Rhode Island (CPNRI) March 26 through 28, providers and their supporters, including consumers and their families, will fan out under the State House rotunda to buttonhole individual legislators in the hours before the bell sounds shrilly at 4 p.m. calling the House and Senate to order.

In the fiscal year beginning July 1, Raimondo has proposed a $6.4 million budget increase targeted for pay raises, including $3 million in state revenue and $3.4 million in federal Medicaid funds. This sum would raise the wages of direct support workers by what state officials estimate as 43 cents an hour.

But the leaders of CPNRI and the Provider Council, another trade association, say that to stabilize the private system of developmental disability services, providers need about $28.5 million in state revenue, which would generate a roughly equal amount in federal Medicaid payments.

“We recognize that this is a substantial amount of money, but it is a result of chronic underfunding,” said Donna Martin and Peter Quattromani in a letter to Raimondo dated Jan. 9. Until March, Martin was executive director of CPNRI. Quattromani, executive director of United Cerebral Palsy of Rhode Island, represented the Provider Council.

Their reference to “chronic underfunding” alludes to “Project Sustainability,” the fee-for service funding model enacted by the General Assembly in 2011 with a $26-million budget cut. Project Sustainability was cited by the U.S. Department of Justice in 2014 as contributing to a segregated system of services that violated the integration mandate of the Americans With Disabilities Act.

With the closing of the Ladd School in 1994, Rhode Island was once first in the nation in de-institutionalizing adults with developmental disabilities and its efforts to include former residents in everyday life in the community. Today, 25 years after the Ladd School was shuttered, Rhode Island is ranked 32nd among the states in its inclusion efforts by CPNRI’s national affiliate, the American Network of Community Options and Resources.

Project Sustainability is currently the subject of two separate reviews, one by a special legislative commission and another by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which has hired a consultant to scrutinize both the reimbursement rates and the fee-for-service model itself.

Between 2011 and 2012, Project Sustainability exacerbated a downward trend in funding for developmental disabilities that eventually leveled off but has not caught up with the pace of inflation, despite budget increases in recent years, according to a ten-year analysis done by CPNRI. The study used state budget figures and consumer price index information kept by the state Department of Labor and Training.

Chart Courtesy of CPNRI

Chart Courtesy of CPNRI

Low wages have put Rhode Island service providers at a disadvantage in trying to recruit a variety of personal care workers like those who work with adults with developmental disabilities, experts say.

CPNRI reports that about one in three workers leave a developmental disability job every year, mostly, they say, because they can’t pay their bills. One in five positions remain vacant, driving up the cost of overtime necessary to ensure the safety of the vulnerable people in care, according to the trade association.

PHI National, long-term care consultants, have produced a chart comparing the earnings of personal care workers in Rhode Island, Connecticut and Massachusetts that shows Rhode Island with the lowest wages and the least buying power relative to the minimum wage.

chart courtesty of PHI and CPNRI

chart courtesty of PHI and CPNRI

Policy experts say that basic demographic data for the nation indicates a shortage of personal care workers in the next few decades. That was one of the key messages delivered by Mary Lee Faye, executive director of the National Association of State Directors of Developmental Disabilities Services, to the Project Sustainability study commission in January.

Meanwhile, the House Fiscal Office estimates that the governor’s proposed raise for front-line developmental disability workers would add add 41 cents to their average hourly wage, lifting it from $12.27 an hour to $12.68 an hour. The overall $6.4 million pay hike doesn’t include raises for supervisors or job development and support coordinators, the House Fiscal Advisor, Sharon Reynolds Ferland, has told the House Finance Committee.

Providers say the state’s estimates don’t match up with actual costs. The state funds 35 percent of overhead related to employment, including mandatory costs like health and dental insurance, workers compensation insurance, payroll taxes, paid time off and other items, according to a CPNRI policy paper.

In reality, providers say, these employee-related expenses cost 64 percent[1] of wages – a point CPNRI’s Martin and the Provider Council’s Quattromani made in their Jan. 9 letter to Raimondo.

Providers fill the gap between the available state and federal Medicaid funding and the actual costs of employee-related overhead by reducing the amount of the wage increase passed along to workers. Kane, in his testimony, said that for the lowest-paid direct care workers, Raimondo’s planned pay increase will not even cover the cost of a separate proposal she has made to increase the state’s minimum wage for all workers from $10.50 to $11.10.

In the last few years, individuals with developmental disabilities, their families, and providers have gained legislative advocates, most prominently Sen. Louis DiPalma, D-Middletown, who is the first vice-president of the Senate Finance Committee.

DiPalma, as chairman of the special legislative commission studying Project Sustainability, convinced a consultant involved in developing that fee-for-service model to return to Rhode Island and testify about his work last November.

Mark Podrazik, a principal in the Arizona-based Burns & Associates, made it clear that Project Sustainability was shaped in a frantic effort to control costs.

Mark Podrazik * Photo By Anne Peters

Mark Podrazik * Photo By Anne Peters

The firm ultimately was paid a total of $1.4 million to develop Project Sustainability and monitor how it affected spending for developmental disabilities services. (The funding model contains no provisions for measuring the impact of services on individuals.)

Podrazik testified that some of Burn’s key recommendations were ignored, including a proposed base pay of $13.97 an hour for direct care workers that would increase within a year or two to $15 an hour. That was in 2011.

Today, eight years later, advocates are still chasing that $15-hour wage. About a month ago, DiPalma and Rep. Evan Shanley, D-Warwick, introduced companion bills to raise direct care workers’ pay to $15 an hour by July 1, 2020. The chairman of the Senate Finance Committee, William D. Conley, was among the co-sponsors of DiPalma’s bill.

More recently, DiPalma introduced a second bill that would require all private human service agencies under contract with the state to pay their employees at least 44 percent above the minimum wage at any given time. Both Conley and Senate President Dominick Ruggerio have signed on to this bill as co-sponsors.

A year ago at this time, Raimondo had proposed an $18.4 million cut in developmental disability services for reasons that were never spelled out in public. Raimondo rejected warnings of(BHDDH) that the move would result in waiting lists for services or cuts in programming.

The proposed cut appeared to be unacceptable to an independent court monitor who continues to oversee implementation of the 2014 consent decree. The agreement calls for integrated, community-based services that are inherently more costly than the facility-based system embedded in Project Sustainability.

In May, 2018, the monitor, Charles Moseley, obtained written assurances from Raimondo that she would continue to support the work of the consent decree, which in the moment meant restoring the almost all the $18-million cut.

In the courtroom, the judge who periodically oversees the status of the consent decree, John j. McConnell, Jr. of U.S. District Court, has indicated his willingness to issue orders to ensure that specific goals of the consent decree are met. At the same time, he said he couldn’t order the state to spend a certain amount to achieve them.

Meanwhile, Moseley has continued to keep abreast of budget developments. In February he wrote McConnell, saying Raimondo’s proposed budget “appears adequate” to cover a deficit in the current fiscal year and fund the consent decree in the budget beginning July 1.

Without mentioning how the Governor may have calculated developmental disability budgets in the past, Moseley made a point of saying he has received assurances that the latest figures are based on real-time data about the projected use of developmental disability services.

The state’s lawyer, Marc DeSisto, has assured him that “the Governor’s recommended budget accepts the most up-to-date projections for financing the current costs of the system to ensure no changes for individuals with DD and continued commitment to achieving Consent Decree outcomes,” Moseley wrote the judge.

Moseley put the current working budget for the private system of developmental disability services at about $229.4 million. Raimondo’s proposal adds about $4 million to finish the current fiscal year, for a total of $233.4 million. Moseley said the increase includes:

· $1 million for the estimated growth in the number of people receiving services

· $1.3 million for increased costs of providing services

· $645,000 to compensate for unrealized savings in moving group home residents into less costly residential options

· $500,000 in other priorities.

In the fiscal year beginning July 1, Moseley said, Raimondo would add about $7.3 million to the private developmental disability system, for a total of $240.2 million. That figure includes:

  • $516,000 for continued growth in the number of people receiving services

  • $2.7 million for increased costs in providing services.

  • $6.4 million for the wage increase to direct care staff.

Those totals are offset by about $1.3 million in increased expectations for savings in residential costs and another million in savings from a reform initiative that didn’t start on time.

Moseley said all his figures were rounded off.

Deep in the background, BHDDH is quietly gearing up for a top-to-bottom analysis of Project Sustainability itself – a move applauded by DiPalma, providers, families and consumers. The lack of flexibility in services provided by Project Sustainability also has drawn the criticism of the court monitor.

Providers have said the funding formula does not allow them to plan on services for longer than three months at a time and makes it difficult for them to base their services in the community.

For example, Project Sustainability assigns staffing ratios according to the degree to which a person may be unable to do basic things independently, but doesn’t take into account the resources that person might need to get to a job – or hockey game – in the community.

Project Sustainability originally made it difficult for individuals to hold jobs in the community by providing work-related services only at the expense of other kinds of daytime supports.

In 2017, to comply with the work goals of the consent decree, BHDDH launched an add-on program of performance payments for providers for placing clients in community-based employment and for meeting job-retention goals.

DiPalma has said it is imperative that BHDDH finish a new rate model for private developmental disability services in time for Raimondo to introduce her budget to the General Assembly next January.

To satisfy the consent decree, the new design would have to focus on helping individuals lead regular lives in the community. Such a model would inevitably demand a greater financial commitment from the state and pose a new test of lawmakers’ values.

RI To Review "Project Sustainability" Funding Model For DD Services With Help From NESCSO

By Gina Macris

The state of Rhode Island has hired NESCSO, the non-profit New England States Consortium Systems Organization, to review the fee-for-service Medicaid funding structure used to reimburse private providers of services for adults with developmental disabilities since 2011.

The project, launched by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), represents a key step toward meeting the overall objectives of a 2014 consent decree which requires the state to create a community-based system of services to correct violations of the integration mandate of the Americans With Disabilities (ADA.)

The current fee-for-service reimbursement model, called Project Sustainability, incentivizes facility-based, segregated services, according to findings of the U.S. Department of Justice which led to the consent decree.

Project Sustainability, accompanied by $26 million in budget cuts effective July 1, 2011, resulted in drastic wage reductions among private service providers, but raising worker pay alone will not fix the problem.

Project Sustainability also was set up to fund staffing for groups of people engaged in activities in one place but didn’t provide for the degree of supervision or transportation needed to individualize services in the community on a broad scale, as required by the Olmstead decision of the U.S. Supreme Court. That decision re-affirmed the integration mandate of the ADA.

In sheltered settings, for example, the ratio of direct care workers to clients might have been set in the funding formula at 1 to 10, but additional staffing would be needed to support that many people in the community, according to language in the contract between NESCSO and BHDDH.

The contract says supplemental payments have been used to “address the deficiency in the payment rates.” These supplemental payments “are an increasing portion of overall payments, reflecting the inadequacy of the current rates,” the contract said.

It says BHDDDH is seeking technical assistance from NESCSO in reviewing the best strategies for achieving an integrated, individualized system of services that complies with both the consent decree and the Medicaid Home and Community-Based Services Final Rule.

The consent decree affects daytime services, with an emphasis on competitive employment for adults with developmental disabilities.

The Home and Community-Based Final Rule (HCBS) is Medicaid’s interpretation of what the ADA’s integration mandate should look like in practice. Unlike the consent decree, it addresses residential services, calling for options that enable clients to live in less restrictive settings than group homes.

BHDDH also asks NESCSO to help it develop an “optimal and balanced system of services and payments” that will promote individually-designed programs according to the preferences and direction of the consumers themselves.

As part of the overall picture, the design and oversight of individual service plans would be separated from funding and actual delivery of supports to protect the interests of consumers and comply with the HCBS Final Rule in so-called “conflict-free case management.”

The consent decree also calls for a separation between funding, case management, and delivery of services. Currently, BHDDH is responsible for both funding and case management.

The total contract, designed for an 18-month period, will cost nearly $1,366,000 in federal and state Medicaid funds. That sum includes the entire developmental disabilities project, a rate review for behavioral healthcare services, and technical assistance at Eleanor Slater Hospital in connection with developing outpatient services for patients.

A BHDDH spokeswoman said Feb. 28 that the amount to be spent in the current fiscal year on the developmental disabilities portion of the project, originally set at about $400,000, will be scaled back to $200,000, because the work did not begin as anticipated in January. The fiscal year ends June 30.

There is $500,000 budgeted for the developmental disabilities work in the fiscal year beginning July 1.

BHDDH director Rebecca Boss said the department “Is pleased to partner” with NESCSO.

“NESCSO offers BHDDH the expertise of the other New England states and brings a team with background in specialized population-based needs and solutions, financial expertise, analytical depth and knowledge of federal regulation, resources and compliance requirements,” she said.

NESCSO is a non-profit collaboration among the health and human services agencies of Rhode Island, Massachusetts, Connecticut, New Hampshire and Vermont and the University of Massachusetts Medical School. Through shared information and expertise, it works to promote policies and programs that will serve the needs of New England states in a cost-effective manner, according to its website.

State Sen. Louis DiPalma, D-Middletown, the chairman of special legislative commission studying Project Sustainability, said the review of the funding model will be “pivotal” in shaping the future of the private system of developmental disability services.

“I give the department (BHDDH) credit” for moving forward with the project, DiPalma said. NESCSO, led by a former Rhode Island Medicaid director, Elena Nicolella, is held in high regard, he said.

At the same time, DiPalma said it is imperative that the review of the funding structure begin immediately and be completed in time for Governor Gina Raimondo to submit her budget proposal to the General Assembly for the fiscal year beginning July 1, 2020.

Expert testimony already given to the Project Sustainability commission made it clear that a review of the funding structure was long overdue, DiPalma said. With BHDDH already taking that step, the commission might still say that a rate review should be conducted every five years, as recommended by healthcare consultant Mark Podrazik.

Podrazik is a principal in Burns & Associates, which was hired to help BHDDH develop Project Sustainability. Testifying in November, he made it clear that the state ignored some of the firm’s key recommendations, instead shaping the funding structure through a frenzy to control costs.

RI Parents: System Of Care Fails To Address Supervision of Adults With DD In Hospital Setting

Jane Sroka * all photos by anne peters

Jane Sroka * all photos by anne peters

By Gina Macris

Access. Quality. Safety.

Those are the three words chosen by officials of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to sum up their overarching goals in serving adults facing intellectual and developmental challenges.

But at a public forum in Warwick Feb. 5, Jane Sroka, the mother of a man with intensive special needs, said the reality falls far short of those three goals when adults with special communications and behavioral needs are hospitalized.

The Medicaid dollars to which Sroka’s son is entitled through Home and Community-Based Services funded through BHDDH stop at the hospital’s door.

“My son needs 24/7 eyes-on supervision at all times. It’s huge. It’s life and death. That’s what it is,” she said.

In the hospital, Sroka said, “I was with him 24/7. He was awake 24/7. I was awake, 24/7. That was tough. It’s grueling on everybody.”

You’re talking about putting safety first? This is safety first,” Sroka said.

Not providing that round-the-clock supervision, in her son’s case, would have been dangerous, she said.

It’s not that the nurses don’t care, she said, but “if I wasn’t there, they wouldn’t have a clue about what to do or how to do it or when to do it, or whatever. It’s dangerous. And it has to change,” she said. She said she knows she is not alone.

Gail Peet had a similar story. She said her daughter, 47, who is non-verbal, became extremely agitated when a feeding tube was inserted.

After her daughter was transferred to a nursing home, Peet said, she asked the staff to put a binding around the feeding tube to prevent her daughter from ripping it out.

The nursing home refused, on the grounds that the binding would constitute a “restraint,” Peet explained after the forum. The next morning, the staff discovered that Peet’s daughter had indeed ripped out the tube, which had to be re-inserted, causing her the additional pain of a second procedure.

In neither Peet’s nor Sroka’s case did there appear to be a plan for in-hospital or discharge care that addressed complications that could arise from individuals’ particular challenges as persons with developmental disabilities.

Rebecca Beaton

Rebecca Beaton

And Rebecca Beaton, who uses a wheelchair and must make a great effort to shape each word, said she, too, needs 24-hour care if she goes to the hospital because she has a speech problem and not everyone understands her. A support person seated next to her at the forum repeated her words for clarity.

John Susa, former chairman of the Rhode Island Developmental Disabilities Council and the father of a man with extensive needs, said there used to be a pool of state funds — outside the federal-state Medicaid structure — that was once used only in emergencies involving adults with developmental disabilities. He suggested that officials re-visit that idea.

Kerri Zanchi, Director of the Division of Developmental Disabilities (DDD),, stood at the podium of a meeting room in the Warwick Public Library, taking notes.

Kerri Zanchi

Kerri Zanchi

Medicaid separates Home and Community Based Services (HCBS) from hospital services to avoid duplication, Zanchi explained.

“But I hear you,” she told Sroka and Peet, that the situations they described were not about duplicate services.

Zanchi raised the possibility that an upcoming initiative, the creation of a “Health Home,” might open an opportunity to provide the kinds of supports that Sroka and Peet needed in the hospital and nursing home. A Health Home is a Medicaid-spawned concept for the management of services, not a bricks and mortar facility.

“It is so important for the individuals we love and support to have that consistency and continuity of care,” she said.

Earlier in the forum, Zanchi had explained the Health Home as an entity that would manage a program of individualized services around the unique needs and preferences of a particular person served by DDD.

FROM OLMSTEAD TO HEALTH HOMES


Medicaid created the Health Home option to separate the design and management of services from the funding and delivery of services. The goal is to avoid any conflict of interest that might compromise the quality of care.

The states must provide so-called “conflict-free case management” by 2022 to comply with the Medicaid Home and Community Based Services Final Rule, issued in 2014 to align Medicaid with the integration mandate of the Americans With Disabilities Act.

According to the 1999 Olmstead decision of the U.S. Supreme Court, the integration mandate says individuals with disabilities must have access to the supports they need to live regular lives in the least restrictive environment that is therapeutically appropriate – and that environment is presumed to be the community.

In line with Olmstead, as well as a 2014 consent decree in which Rhode Island has agreed to desegregate its daytime services for adults with developmental disabilities, state officials and the developmental disability community have embraced the idea of “person-centered planning,” which puts the needs and preferences of individuals at the core of any service plan.

But at the forum, Mary Beth Cournoyer, the mother of an adult son with developmental disabilities and a member of the Employment First Task Force, suggested “whole life” planning as a more encompassing term.

“How do we build lives? It’s 24 hours a day, seven days a week,” she said. The Employment First Task Force to which she belongs was created by the consent decree to serve as a bridge between the community and state government.

Zanchi said state officials will meet with their community partners, including families and providers, to ask them to help draft the design for a Health Home for adults with developmental disabilities before the application is submitted to the federal Medicaid program.

She said DDD hopes to have a Health Home up and running in about 12 months.

NEW WORKPLACE LAW AFFECTING SOME DD SERVICES

The forum also brought to light apparently unintended consequences of the Healthy and Safe Families and Workplaces Act, which went into effect last July 1, guaranteeing all workers get time off to go to doctors’ appointments and attend to other important personal and family needs. Companies with 17 or more employees are required to give paid leave.

Sue Babin of the Rhode Island Developmental Disabilities Council said that those who direct services for themselves or a loved one are receiving conflicting advice from fiscal intermediaries about whether the law applies to support staff for adults with developmental disabilities.

And some individuals who are advised the law does apply and are granting time off to their support staff are having problems finding substitute workers, Babin said.

Zanchi suggested a separate meeting with families that organize and direct their own services to discuss the impact of the new workplace law and any other inconsistent advisories they may be receiving from fiscal intermediaries, who control the individualized budgets the state authorizes to be spent on services for particular individuals.

RATE REVIEW GEARING UP

In an overview of changes at DDD, Zanchi announced that the division is about to embark on a review of its fee-for-service rate model for reimbursing private agencies that provide most of the developmental disability supports in state.

To that end, BHDDH has selected an outside consultant for the remainder of the current fiscal year and the new budget cycle beginning July 1.

Zanchi declined to name the contractor until a purchase order for services has been signed by the state purchasing office. She did say, however, that the consultant was not Burns & Associates, the Arizona-based company that helped a previous administration devise Project Sustainability That is the name for the existing fee-for-service model that doles out payments for daytime services in 15-minute increments that must be documented by each worker for each client served.

Zanchi said $500,000 for the consultant was budgeted in the current fiscal year, and an equal amount is in the governor’s proposal for the next budget.

To expedite the rate review, the contractor was selected as a “sole source” provider, without the months-long process or issuing a request for proposals and reviewing bids, Zanchi said.

NEW YOUTH AND TRANSITION ADMINISTRATOR

Zanchi announced that Susan Hayward, a veteran social casework supervisor, has been named to the new position of Youth and Transition Administrator, to coordinate a smooth shift for high school special education students moving into adult services.

Employment opportunities and other transitional servicesfor teenagers and young adults are a prime concern of the independent court monitor overseeing implementation of the 2014 consent decree, as well as an earlier interim settlement agreement affecting only youth and adults in Providence.

The 2013 interim settlement agreement addressed violations of the integration mandate of the ADA that involved a special education program at the Birch Academy of Mount Pleasant High School being used as a feeder program for a former sheltered workshop in North Providence called Training Through Placement. The agreement is set to expire July 1, 2020, at the discretion of the U.S. District Court.

BHDDH officials presented a PowerPoint of information covered at the public forum. To view it, click here.

The advocacy group RI FORCE (Rhode Island Families Organized for Reform, Change, and Empowerment) recorded the public forum and has posted the video, in three parts, on its Facebook page. To connect to the video, click here.

RI Governor's DD Budget Would Add $8.7 Million in Medicaid Funding For Wages, Higher Costs

By Gina Macris

Rhode Island Governor Gina Raimondo’s recently released budget proposal would add nearly $8.7 million in new funding to the system of privately-run services for adults with developmental disabilities in the next 17 months, through June 30, 2020.

Most of that overall $8.7-million-increase, $6.4 million in federal and state Medicaid money, would fund raises for workers of some three dozen private agencies that provide developmental disability services under contract with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The raises would take effect July 1. Funding for the added wages - an estimated 44 cents an hour – is carved out in the budget bill for Fiscal Year 2020 that Raimondo has submitted to the General Assembly.

The budget bill also requires that almost $1.6 million in federal-state Medicaid funds be earmarked for technical assistance to private providers changing from segregated care to community-based, integrated service to comply with a 2014 federal consent decree.

The current overall spending level for developmental disabilities, $271.7 million, would increase to $273.1 million for the budget ending June 30. In the next fiscal cycle beginning July 1, the spending ceiling would rise to nearly $280.9 million, including federal, state and miscellaneous sources of revenue.

The Division of Developmental Disabilities (DDD) draws more than half the resources assigned to BHDDH – which is currently budgeted for a grand total of almost $422.5 million. Under Raimondo’s plan, the bottom line for the entire department would grow to about $448.5 million in Fiscal 2020 – an increase of $26 million, including about $19.7 million in supplemental funding for the existing budget.

Developmental disability services are financed through the federal-state Medicaid program, with the federal government paying nearly 53 cents on the dollar.

The governor’s executive summary, however, tends to focus on the state outlay alone. It says $3.1 million in state funds would be earmarked to cover an existing deficit and an additional $3.3 million would be set aside in the fiscal year beginning July 1 for increased caseload costs.

Those budget items, combined with the state’s share of the $6.4 million proposed wage increase - $3 million – add up to $9.4 million, nearly twice the overall $5 million in new state tax dollars that Raimondo would apply to developmental disabilities for the remainder of the current fiscal year and the next one.

The state would have to use savings in other areas to fully fund Raimondo’s plan for developmental disabilities, but neither the budget language nor the governor’s narrative spells out which cost-cutting measures would fill the gap.

The first-quarter spending report for BHDDH put the projected deficit in developmental disabilities at a total of $7.6 million for the current fiscal year, including federal and state funding.

The updated report for the second quarter will not be ready until Jan. 31, according to BHDDH officials.

But at a recent press briefing on the budget, Rebeca Boss, the BHDDH director, said she is satisfied that the governor’s proposal will enable the department to balance its current budget.

Among other things, the plan would restore money in the current budget that the DDD otherwise would have saved if it had won federal approval for a “Health Home,” a Medicaid option featuring a managed-care approach that also provides for a third-party to coordinate services for individuals.

The Health Home would help DDD comply with a Medicaid rule for Home and Community Based Services which requires case management to be separate from funding or service delivery. Currently DDD is responsible both for funding and for case management, which Medicaid perceives as a conflict of interest.

Boss said BHDDH has not yet submitted an application for a Health Home option for developmental disabilities. The budget assumes that a health home plan for developmental disabilities will be approved and go into operation during Fiscal 2020, which begins July 1.

Medicaid will reimburse 90 percent of the state outlay for health homes for a maximum of two years. After that period, the reimbursement rate for health homes will drop back to the regular rate for Rhode Island, whatever it may be at that time..

To help close the current deficit, the governor recommended an additional $273,412 in state revenue for BHDDH to pay homemaker licensed practical nurses who work with adults with developmental disabilities. The Executive Office of Human Services granted them a slightly higher pay increase than BHDDH had budgeted and the General Assembly had approved.

In adding $3.3 million in state revenue for “caseload” expenditures for the 2020 fiscal year, Raimondo’s executive summary said she “accepts the Department’s (BHDDH’s) most up to date projections” on costs, “ensuring no changes to services for DD consumers and continued financing to improve achievement of consent decree mandated services.”

Last year at this time, Raimondo had proposed cutting a total of more than $18 million in federal-state funding from developmental disability services, with a spokeswoman for the Office of Management and Budget saying the proposed reduction was based on calculations made from “estimated growth rates in the cost of providing services.” She did not elaborate.

Raimondo, pressed by the independent court monitor overseeing the implementation of a 2014 federal civil rights consent decree, eventually restored the funding and pledged the state’s support of the work ordered by the federal court.

The consent decree requires Rhode Island to correct violations of the integration mandate of the Americans With Disabilities Act, reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, by ending its over-reliance on sheltered workshops and segregated day care.

This year, according to Boss, BHDDH submitted cost projections on the basis of actual claims, as directed by the Executive Office of Health And Human Services, rather than individual funding authorizations.

In the process of updating projections, the data was refined to remove claims that had been double-counted on Medicaid rolls of both BHDDH and EOHHS, according to the executive summary of the budget.

For Fiscal 2020, the governor’s budget summary highlighted three additional areas for savings:

  • ·A continuation of “residential rebalancing”, a multi-year effort to reduce the number of people in group homes, a cost-saving measure that also is intended to provide more “community-based placements such as shared living.” The budget projects $1.5 million in “residential rebalancing” in 2020.

  • Closure of one state-operated group home for an estimated savings of nearly $92,000. The staff in that location will move to other sites, reducing the need for overtime in the state-run system.

  • So-called “right sizing” of staffing at the state-run group home system to realize additional projected savings of $202,721. “Right-sizing” means staffing patterns will be reassessed and employees will re-bid jobs. This change is expected to reduce overnight staffing and further reduce overtime costs.

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

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

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

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.

RI Senate DD Commission To Hear Options For Changing Funding Model From Two Experts

By Gina Macris

Two experts with broad experience in developmental disabilities will provide their perspectives on best practices Tuesday, Jan. 8 at the next meeting of the Rhode Island Senate commission studying “Project Sustainability,” the state’s much-criticized fee-for-service reimbursement system for private service providers.

Mary Lee Fay is executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS), based in Alexandria, VA.

William Ashe helped develop Vermont’s current “bundled” payment system. So-called “bundled” payments cover a defined set of services for a specific period of time. The system allows for individualized funding around each person’s unique needs, according to a description of the program Ashe wrote for the Vermont legislature in 2016. He is also involved in current efforts to update the Vermont payment system.

Ashe has experience in state government in Massachusetts and as a longtime private provider of developmental disability services in Vermont.

He has collaborated with the independent federal court monitor who is overseeing Rhode Island’s compliance with a 2014 federal consent decree intended to desegregate the state’s developmental disability service. Ashe has accompanied the monitor, Charles Moseley, on site visits and has written reports that have been incorporated into Moseley’s recommendations to the U.S. District Court.

Fay worked for much of her career for the state of Oregon, becoming director of developmental disabilities, a post she held for 11 years before she moved to NASDDDS in 2012. She is credited with leading the way for Oregon to become a leader in high quality services that allow adults with developmental disabilities more control over their lives.

For her first three years at NASDDDS, Fay focused on working with states to engage adults with developmental disabilities with their communities. She was named executive director in 2015.

Both Ashe and Fay were recommended to the commission by Moseley, the monitor in the consent decree case.

According to a spokeswoman for the commission chairman, Sen. Louis DiPalma, D-Middletown, Moseley said both speakers:

  • are familiar with the way different states manage services

  • are familiar with DD funding policies, practices, and requirements under Medicaid;

  • understand rates, rate setting, and provider billing processes;

  • understand the impact that funding has on the ability of individuals to live and experience full, productive, and integrated lives; and

  • understand approaches other states are using and lessons learned by their successes and challenges.

The Jan. 8 Commission meeting will be held from 2 to 4 p.m. in the Senate Lounge at the State House.

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

Boss DiPalma Quattromani Kelly Donovan Deb Kney Kevin McHale.jpg

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

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

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.







RI Consent Decree Judge Wants To Sharpen Focus On DD Services That Encourage Integration

By Gina Macris

For nearly three years, the U.S. District Court in Rhode Island has monitored the state’s progress in implementing a federal civil rights consent decree that seeks to integrate adults facing intellectual or developmental challenges with their communities, detailing the progress made and work yet to be done.

With the 2014 consent decree nearing the middle of its 10-year run, and an earlier, more limited companion agreement designed to expire in July, 2020, Judge John J. McConnell, Jr. has asked participants to come to court next time with a different approach.

In a hearing Oct.30, McConnell asked an independent court monitor, lawyers for the U.S. Department of Justice and state officials to come to court next time with a focus on the areas of greatest concern and to be prepared with recommendations for what the Court can do other than monitor developments.

On Oct. 30, he boiled down the core issues into two parts.

  • Each person protected by the consent decree should have a thoughtful long-range plan for a career that reflects his or her unique needs, preferences and goals.

  • Actual services funded by the state should fit with the goals of the individualized career development plan.

To be sure, McConnell praised the “tremendous progress” made by the state, including the closure earlier this year of the last sheltered workshop. He also heard about increases in supported employment, the growth of a quality improvement unit aimed at assuring all services meet high standards, and cooperation among state officials and private providers. Providers have said in recent months that their working relationship with state officials is better than it has been in many years.

At the same time, problems persist in finding jobs for young adults and in providing high quality personalized support services for non-work activities that typically take up the majority of individuals’ time, according to the testimony McConnell heard.

Continuing concerns about inadequate funding surfaced during the Oct. 30 hearing when the independent monitor, Charles Moseley, described a visit he and another consultant had with state officials and 16 providers in early August.

In a report filed with the Court hours before the hearing, Moseley said “significant numbers” of the providers indicated that they continue to run deficits in key areas and that funding allocations for individual services are insufficient to cover the costs of the services that must be provided.

Among major barriers to providing services, 94 percent cited transportation, 88 percent pointed to a lack of funding and complicated billing procedures for reimbursement, and 69 percent highlighted high staff turnover and poor job retention.

All these factors become particularly problematic when the state and the federal government are asking providers to undertake more staff training to gain expertise in the principles and practice of individualization, to enroll more young adults as clients, and to provide individualized support in the community as each of their charges goes to different job sites and engages in non-work activities in various places.

According to the consent decree, all young adults who left high school between 2013 and 2016 – those seeking adult services for the first time - were to be offered employment by July 1, 2016. But the state still hasn’t fulfilled that requirement, even after the deadline was extended to Sept. 30 of this year.

Moseley reported that on Sept. 29, the state had achieved 77 percent of that goal, or 257 job placements out of an “employment census” of 334 young adults.

Victoria Thomas, the DOJ lawyer, said she believes the state is using effective strategies to reach out to the remaining young adults and will monitor the situation.

She said DOJ lawyers visited the Birch Academy at Mount Pleasant High School recently and while they were generally delighted with the transformation, they were surprised to learn “how few high school students exited directly into supported employment.”

Students at the Birch Academy are protected by the predecessor to the 2014 statewide consent decree, called the Interim Settlement Agreement. The agreement, signed in 2013, was limited to addressing the use of the Birch high school program as a feeder to a now-defunct sheltered workshop in North Providence called Training Through Placement.

Thomas said that, according to the Interim Settlement Agreement, students who turn 18 should have the support they need to make the transition to work or actually hold a job while they are still in school.

Thomas said she wants to address the transition issue in the time remaining for the Interim Settlement Agreement, which is to end July 1, 2020.

All parties to the settlement must be in “substantial compliance” with the Interim Settlement Agreement a year before it expires. What substantial compliance looks like might be different for the state than for the Providence School Department, said Thomas, telling the judge that the DOJ will prepare some recommendations on the matter.

The city has met virtually every target set out by the Interim Settlement Agreement and earned McConnell’s praise. “Keep it up,” he said.

The state is responsible to the court for the work done by the private service providers under the terms of both the Interim Settlement Agreement and the statewide consent decree.

The providers’ performance got mixed reviews from Moseley and another consultant, William Ashe, who in early October analyzed a small random sample of plans, looking for the degree to which they were individualized and how they compared to the actual services provided.

The consultants expected the providers to use a guide on “person-centered thinking” developed by the Sherlock Center on Disabilities at Rhode Island College to formulate plans that put a particular person’s needs, preferences, and goals at the center of the planning process.

In 10 of the 17 plans, participants chose non-work activities from a menu of offerings that rotated on a weekly schedule, according to Ashe. But this kind of choice is not considered “person-centered” because the participants were not able to consider the the full range of opportunities available in the community.

“It is fair to say that the implementation of person-centered planning remains a work in progress where there has been significant but uneven advances in the development of person-centered planning practices. There remains a significant amount of work yet to be done,” Ashe wrote.

He found other instances in which plans indicated individuals had significant problems in communication. But neither the plans nor the actual services addressed ways in which communication could be improved.

“Frequently, there were clear instances of personal preference identified in the planning process that did not appear to be reflected in the services that were actually happening, Ashe said.

For example, one man indicated he wanted to learn to read and use a computer, but none of the goals written in his plan responded to that request.

Some of the plans reviewed were for clients of Easter Seals Rhode Island, formerly Community Work Services, an agency that nearly lost its license to operate in 2017 but has made a dramatic turnaround during the last year.

Ashe said “there are still very substantial steps that need to be taken in order to get this organization to an acceptable level of “person-centeredness” and to some extent, the same applies to other agencies.

Agencies should “diversify” the way that integrated day services are provided, he said.

From what Ashe observed, he said, it felt like community agencies like the YMCA and a bowling alley were becoming “a little bit like a day program” as staff and clients from one or more service providers gathered in the same place at the same time.

At the bowling alley, staff from several agencies sat together with their clipboards and watched the bowlers, Ashe said.

Based on a review of documents and direct observations, Ashe said, “there is a significant ongoing need for continued training on person-centered planning with an emphasis on how to take a plan and put it into action.”

“A good person-centered plan by itself does not produce good person-centered outcomes. How to individualize and implement these plans needs to be a focus for training,” Ashe concluded.

Read the full monitor’s report here.

Providence Woman Featured In "Intelligent Lives," New Documentary Film On Inclusion

By Gina Macris

“Intelligent Lives,” a new documentary film, profiles Rhode Islander Naomie Monplaisir and two other adults with intellectual disabilities whose personal stories defy conventional assumptions and help the filmmaker deliver a strong rebuke of standard IQ testing.

Naomie Monplaisir Photo courtesy of Dan Habib

Naomie Monplaisir Photo courtesy of Dan Habib

The Rhode Island premiere of the film will be free and open to the public at Rhode Island College on Thursday, Oct. 11, at 5:30 p.m., with the filmmaker, New Hampshire-based Dan Habib, leading a panel discussion after the screening.

Academy Award-winning actor Chris Cooper narrates the documentary, which, in addition to Monplaisir, profiles a Massachusetts high school student making the transition to adulthood and a man who works as a teaching assistant at Syracuse University.

Monplaisir, now 27, changed course in her life because of the landmark Olmstead consent decree in Rhode Island, the first settlement in the nation which enforces the integration mandate of the Americans With Disabilities Act specifically for daytime services for adults with developmental disabilities.

For Monplaisir, a Providence resident who enjoys singing and dancing at her Haitian Creole church, the 2014 federal consent decree has meant a chance to pursue the job of her dreams rather than being shunted off to a sheltered workshop after high school.

Monplaisir will participate in the panel discussion after the screening, along with her brother, Steven Monplaisir, and Kiernan O’Donnell, Associate Director for Vocational Services at the John E. Fogarty Center of North Providence. The Fogarty Center has provided Monplaisir with supported employment services.

“People with intellectual disabilities are the most segregated of all Americans,” said Habib, who is affiliated with the Institute on Disability at the University of New Hampshire.

Nationally, he said, “only 17 percent of students with intellectual disabilities are included in regular education. Just 40 percent will graduate from high school. And of the 6.5 million Americans with an intellectual disability, barely 15 percent are employed.”

In Rhode Island, the percentage of adults with intellectual or developmental disabilities working in integrated settings was above average, at 27 percent last March, according to the latest Annual Day and Employment Survey of the Sherlock Center on Disabilities at Rhode Island College.

But that figure is dramatically below the general population’s participation rate in the national labor force, which was 68 percent last March, Habib said.

The screening, at the Nazarian Center for the Performing Arts in Sapinsley Hall, will be hosted by the Sherlock Center, which requests advance registrationfor those planning to attend. To register, go to http://www.ric.edu/sherlockcenter/ilevent.html

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.

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.