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

Iraida Williams

By Gina Macris

(This article was updated June 9 )

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

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

Marti Rosenberg

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

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

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

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

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

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

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

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

Kelly Donovan

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

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

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

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

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

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

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

Kevin Nerney

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

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

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

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

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

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

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

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

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

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

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

Kevin Savage

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI Plans For Emergency Funding To Shore Up DD Providers After Community Calls For Help

By Gina Macris

Rhode Island Governor Gina Raimondo announced March 26 that the state will soon release a total of $15.4 million in state and federal Medicaid “retainer payments” to shore up private service providers facing unprecedented challenges in the coronavirus pandemic.

The announcement came hours after representatives of private service providers and a prominent advocacy group expressed anxiety about a heightened vulnerability of people with developmental disabilities to the disease and called on the governor to do more.

The retainer payments “are seen as essential to supporting our critical DD (developmental disability) partners, many of which had to cease services due to COVID 19,” a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said late in the afternoon.

BHDDH and the state’s Medicaid system, managed by the Executive Office of Health and Human Services, are working to make the funds available “as soon as possible,” the spokesman said. He said the retainer payments have been approved for a three-month period, with the first checks going out as early as next week.

Several hours before the announcement, spokesmen for the Community Provider Network of Rhode Island (CPNRI) and the Developmental Disabilities Council of Rhode Island issued a statement detailing the vulnerabilities of individuals with developmental disabilities and those who live and work with them.

“We need to act now to address the needs of our community, which we have identified repeatedly to the administration,” said Michael Andrade, President of CPNRI, a trade association of 24 private agencies licensed by the state to provide support and care for adults with developmental disabilities – including those in group homes.

Andrade said state testing priorities and emergency planning must include group homes and people in shared living, an arrangement in which adults with developmental disabilities live in private apartments or single-family houses with a host family.

Kevin Nerney, executive director of the Developmental Disabilities Council, agreed that testing, protective equipment, and other emergency measures “must be a priority” for vulnerable individuals and their caregivers.

“There is an obvious concern about spreading the virus by those receiving services and those who provide those services,” Nerney said.

“As people become sick, they may still require in-person services. We want to make sure it is possible to continue services when necessary, even for the sick,” Nerney said.

Those who care for people with developmental challenges must be considered “the essential health care workers that they are” and must be compensated appropriately during the crisis, Nerney said.

The BHDDH spokesman said later in the day that the administration has taken steps toward a declaration that those who work with persons with disabilities are “essential health care workers” necessary in the state’s emergency response to the virus.

The spokesman, Randal Edgar, said state human services officials have “escalated” the needs of developmental disability service providers for Personal Protective Equipment (PPE) to the Rhode Island Emergency Management Agency and are trying to expand the availability of interpreter services. Some direct care workers who provided daytime services have been re-assigned to residential programs, Edgar said.

About 4,000 Rhode Islanders with developmental disabilities receive services funded by BHDDH, including 1180 who live in group homes. Many adults with developmental disabilities face challenges in practicing good hygiene and social distancing and have underlying medical conditions that put their immune systems at greater risk than the average population.

Edgar said the governor, BHDDH and EOHHS “are committed to meeting the needs of the state’s most vulnerable residents. This pandemic is challenging our State and all Rhode Islanders, and we recognize that there is significant impact on individuals with disabilities, their families, and the direct care workforce who support them. We are working tirelessly to ensure that resources are in place to support residents with developmental disabilities as well as the providers who care for this population.”

In a televised afternoon briefing March 26, Raimondo said her goal is to develop the capacity to test 1,000 people a day in a week’s time, a pre-requisite in defining the spread of the coronavirus and informing the state’s efforts to contain it.

Rhode Island has about 5,000 workers in the developmental disabilities field, not counting family members who also provide care and support, according to CPNRI and Nerney.

Tina Spears, executive director of CPNRI, said in an email that providers are “extremely nervous” about infection among those in their care and about their ability and readiness to respond to such a scenario.

“We are deeply troubled by the lack of emergency planning,” she said in the email, sent early in the afternoon.

Providers are taking emergency measures independent of state government, but they need more support and resources, she said.

“We are equally concerned for family caregivers at home,” said. “If and when they become ill, we must be able to step in and support the family,” Spears said.

Most of the 4000 authorized to receive services from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) live at home and receive daytime services from a private agency.

Of the total BHDDH caseload, about 700 individuals living at home also have service programs directed independently by their families. These families need flexibility to hire additional staff – including other family members – in an emergency, Nerney said in a separate letter to Raimondo that was signed by the leaders of several organizations serving the developmental disabilities population.

Spears, meanwhile, said that with daytime programs closed, agencies are unable to provide services to participants living in family homes on a broad scale because of a lack of authorization from the state.

She said providers were given the authorization to provide “tele-health” services, but “this is not helpful in most situations for the people we support.”

Some providers have reluctantly laid off staff, because they cannot afford to keep them, Spears said. The state’s fee-for-service system reimburses private agencies only after services are provided, usually in ratios of one worker to several clients. One-to-one services are more costly, and no adjustments have been made to authorize them on a broad scale, Spears said.

“We would prefer to be overstaffed at this point and be able to provide more support in the community. This has been our consistent goal,” Spears said.

After the BHDDH announcement, Spears said in a telephone interview that she was “heartened” by the news of the retainer payments but is awaiting additional detail. Spears said she hopes the payments cover pay increases for “our vital workers.”

Spears, Andrade, Nerney and others had asked Raimondo for emergency funding to help caregivers and providers weather the crisis. The privately-run system of services was already in precarious financial health before the crisis, according to consultants for BHDDH.

Nerney has urged Raimondo to follow the lead of the state of Connecticut, which continues to pay private service providers, raising rates.

As part of Connecticut’s emergency preparedness response, the state’s Department of Developmental Services has increased allocations to group home operators by 25 percent and has increased payments to providers of daytime programs by 5 percent, with the proviso that providers will not lay off workers.

The Connecticut advisory to developmental disability service providers was attached to a letter from Nerney to Raimondo dated March 23. It raised many of the same concerns as the CPNRI statement and and aired specific questions from families seeking guidance about details of the care of family members at home who have developmental disabilities.

In addition to Nerney, the letter was signed by Amy Grattan, Executive Director of the Sherlock Center on Disabilities; Deanne Gagne, Coordinator of the Cross Disability Coalition; Sam Salganik, Executive Director of the Rhode Island Parent Information Network; Deb Kney, Executive Director of Advocates in Action; Joanna Scocchi, Executive Director of the ARC Rhode Island Family Advocacy; and Ken Renaud, Coordinator of RI FORCE, a family advocacy group.

Moseley To Step Down As Court Monitor of RI Olmstead Consent Decree, Citing Health Concerns

Charles Moseley

By Gina Macris

Charles Moseley, the independent federal court monitor overseeing implementation of two federal civil rights decrees affecting Rhode Islanders with developmental disabilities, will step down at the end of September because of what he termed “emerging health issues.”

Brian Gosselin

In a related matter, Brian Gosselin, chief strategy officer at the Executive Office of Health and Human Services (EOHHS), has been named the state’s consent decree coordinator, a post he has filled on an interim basis twice in the last few years. Rhode Island has had five consent decree coordinators, including Gosselin, in five years.

The personnel changes were announced July 18 by EOHHS. Before Moseley resigns on Sept. 30, he said in his letter, he intends to complete his assessment of whether the city of Providence is in substantial compliance with the first of the two federal agreements, reached in 2013.

In it, the city stopped using the Birch Academy at Mount Pleasant High School as a feeder program for a now-closed sheltered workshop called Training Through Placement and instead pledged to help high school students with intellectual or developmental challenges make the transition to competitive employment in the community.

The 2013 “Interim Settlement Agreement” (ISA) is set to expire in 2020, but lawyers for the U.S. Department of Justice (DOJ) have said the city must be in “substantial compliance” a year ahead of time. Moseley’s resignation letter indicated he is working on that assessment. The city, meanwhile, has asked for early release from the ISA.

Moseley has served as the federal court monitor since late 2014, a few months after the state and the DOJ settled a broader civil rights complaint saying that Rhode Island’s system for developmentally disabled adults relied too heavily on sheltered workshops and segregated day centers. Former Gov. Lincoln Chafee signed a consent decree with the federal government in which he pledged that the state’s system would be overhauled by 2024, making certain that those who wished to participate in work, learning and recreation in the larger community would be helped to do so.

The 2014 settlement marked the first Olmstead consent decree in the country targeting segregated day services for adults with developmental disabilities. The Olmstead decision of the U.S Supreme Court reinforced the Integration Mandate of the Americans With disabilities Act. Previously, the DOJ had enforced the ruling in connection with segregated housing.

Moseley is a former director of developmental disabilities in Vermont and a former associate executive director of the National Association of State Directors of Developmental Disabilities Services.

A new court monitor would need the approval of the state, the DOJ and Judge John J. McConnell, Jr. of U.S. District Court, who is overseeing the case. McConnell has made it clear that he relies on Moseley’s recommendations in steering the implementation of the consent decree.

In his letter, Moseley said the decision to step away after five years “is a very difficult one to make.”

He said he has enjoyed working with all involved and will miss the “in-depth discussions and negotiations that we have had in our ongoing efforts to achieve the goals and outcomes identified by the two agreements.”

Moseley, who lives in Vermont, has made site visits to Rhode Island several times a year, usually keeping out of the public eye, and has incorporated his observations, as well as data supplied by the state and the city, into quarterly reports to McConnell. He also has attended periodic status conferences on the case before McConnell.

“Implementing comprehensive systems change within the boundaries of the complicated developmental disabilities system is challenging,“ Moseley said. He praised a variety of state and city officials for “actively addressing the changes that must be made.” He also recognized the DOJ lawyers for their “constructive approach and unwavering focus” on individuals with intellectual and developmental disabilities.

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

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.

RI Senate Poised To Launch Study of The Way State Reimburses Private Providers of DD Services

By Gina Macris

A proposal for a special commission to study Rhode Island’s fee-for-service reimbursement system for private providers of developmental disability services appears headed for approval on the Rhode Island Senate floor May 1.

The 19-member Senate commission, including representatives of state government, service providers, advocates and the public, would report its findings by March 1, 2019, in time for any recommended legislation to be enacted during next year’s session of the General Assembly.

The  Senate’s Committee on Health and Human Services recommended passage of a resolution creating the commission on a unanimous vote April 24.

The current reimbursement system, called “Project Sustainability,” has been in effect for nearly seven years, which means that there is plenty of data available for analysis, according to Sen. Louis DiPalma, D-Middletown, the principal sponsor of the resolution.

“The goal of 'Project Sustainability' was to bring predictability, efficiency and transparency to the way in which the state pays for the developmentally disabled,” according to the resolution.

But DiPalma said that “we’ve seen some challenges” in Project Sustainability, like a requirement that providers document daytime services in 15-minute increments. That feature has been assailed by service agencies as overly burdensome and costly.

“We have to take a look back and see what worked, what hasn’t worked, and what changes are needed going forward,” DiPalma said.

DiPalma, the Senate’s most vocal advocate for adults with developmental disabilities, is expected to be among three legislators on the 19-member commission to be appointed by the Senate President. 

He said its recommendations would not sit on the shelf. “I don’t do anything for the sake of doing it. I’m about doing the analysis and getting the job done,”  said DiPalma.

In addition, “the members of the commission won’t let it happen,” he said. There will be “joint accountability” for what happens, inside and outside the General Assembly, DiPalma said. 

The membership of the commission would include representation from the Rhode Island Developmental Disabilities Council and a parent group, Rhode Island Families Organized For Reform Change And Empowerment (RI FORCE), as well as the Rhode Island Disability Law Center. Human services officials from the executive branch of government would include the director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and several other representatives of BHDDH and the Executive Office of Health and Human Services.  

The commission would convene at a time of renewed parent advocacy and heightened scrutiny of developmental disability funding by the U.S. District Court in the wake of Governor Gina Raimondo's plans to cut $18.4 million from reimbursements to private providers beginning July 1.

In a 2014 consent decree with the U.S. Department of Justice, the state pledged to move from segregated sheltered workshops and non-work day services to an integrated, community-based system to comply with the Americans With Disabilities Act. 

In the most recent court hearing April 10, providers warned Judge John J. McConnell, Jr. that they would not be able to continue consent decree compliance efforts if the state enacts Raimondo's proposed budget cuts. d

McConnell is expected to consider taking action on the basis of recommendations from an independent monitor in the case sometime before the General Assembly finalizes the next budget. The monitor, Charles Moseley, was to seek consensus from state officials and service providers before submitting his report to McConnell.

If no agreement can be reached, McConnell has said, he is prepared to hear evidence and arguments before deciding on a course of action. 

RI Supported Employment Services Hampered By Lack of Trained Workers, High Caregiver Turnover

By Gina Macris

About 60 percent of all those who start training at Rhode Island College to provide supported employment services to adults with developmental disabilities drop out of the certificate program,  a factor that threatens reform efforts embodied in two federal civil rights agreements.

The drop-out rate in the training program at RIC’s Sherlock Center on Disabilities underlines a shortage of direct care workers in general and in particular a lack of staff qualified to meet the demand from adults with developmental disabilities for employment-related services and to satisfy the requirements of a 2014 federal consent decree and a companion settlement a year earlier.

The specialized training at the Sherlock Center includes classes and field experience in the nuances of supported employment services, from the time an individual starts looking for a job to on-the-job assistance, long-term career planning, and building good relationships with the business community.

The Sherlock Center is under contract with the state to lead the way in educating those who work with adults having developmental disabilities in the best professional practices, consistent with the principles of the consent decree, which puts individuals’ needs and personal preferences at the center of the services they receive.

Workers must successfully complete a course like the Sherlock Center’s before the state will allow private service providers to assign them to help job-seekers find employment that suits them and the businesses that hire them. The Sherlock Center offers its training tuition-free to those who plan to work in one of two pilot supported employment programs;  one funded by the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH),  and another run by the Office of Rehabilitation Services in the Department of Human Services.

The topic of supported employment, primarily the BHDDH program, dominated the discussion at the monthly meeting of the Employment First Task Force Oct. 10. The Task Force is a creation of the 2014 consent decree, which requires Rhode Island to shift from sheltered workshops and segregated day programs to inclusive day services, in accordance with the 1999 Olmstead decision of the U.S. Supreme Court. The decision re-affirmed the integration mandate of the Americans With Disabilities Act.

Vicki Ferrarra                   photo by Anne Peters 

The task force includes representatives of individuals with developmental disabilities, their families, and various community organizations with a stake in the developmental disability service system.  

Vicki Ferrara, who represented the Rhode Island Association of People Supporting Employment First (RI APSE), a professional organization, said there was a 40 percent completion rate in the Sherlock Center training program.

She works as the Sherlock Center’s coordinator for integrated employment.  The group she represented at the meeting is part of a national organization involved in setting professional-level standards for various aspects of supported employment services.

Ferrarra said some direct care workers complete the supported employment training and then leave the field of developmental disability services entirely, often because of low wages.  

Others drop out of the course because they find the work too challenging, she said.

Still others cannot complete the classes or field work because the shortage of direct care workers is so acute that their employers call them in to cover vacant shifts on the job for basic health and safety reasons.

Ferrara said the state does not pay for substitutes while the regular caregivers are in class.

She said the direct care workforce must be stabilized before the state gains enough qualified job coaches,  job developers and supported employment specialists.

Many new hires leave when they realize the job of providing direct support to adults with developmental disabilities is complicated and carries many responsibilities. The average wages are estimated at about $11.50 an hour, including a pay bump of 36 cents an hour that is being processed by the workers’ employers this month. 

The average turnover ranges from 60 percent in the first six months to about 30 percent over 12 months, according to figures presented to the General Assembly earlier this year.

Ferrarra said workers should have at least six months’ experience, learning the basics of direct care, before they are sent to train for specialized credentials. In at least some parts of the service system, new workers get acclimated by working under supervision with just a few specific clients, learning their needs and preferences and strategies for cope with any challenges they might present.

But Ferrara said some workers arrive at the Sherlock Center for specialized employment-related training during their first week on the job.

In September, an official of the supported employment program run by BHDDH reported that the enrollment of individuals seeking jobs was 92 short of the available spaces, a maximum of 517. (Click here for related article.) 

On Oct. 10, Howard Cohen, a member of the Task Force who is the father of a man with developmental disabilities, said a lack of qualified staff has come up repeatedly when he has participated in other discussions about supported employment.

Ferrara provided information on the three-part training program at the Sherlock Center as the Employment First Task Force was considering recommendations it planned to make to the state about the future of supported employment services.  

Instead, questions arose on details that needed clarification, like how the clients for supported employment services have been selected, and how families that hire their own workers through a fiscal intermediary to support their loved ones can get broader access to these services. 

Brian Gosselin, Chief Strategy Officer for the state Executive Office Of Human Services, urged the task force to put its questions in writing and submit them to the state. Gosselin was involved in the design of the BHDDH supported employment program.  That pilot will complete its first program year at the end of December and is under evaluation. By year’s end, the ORS program also will be well into the second half of its initial 12-month run.

Dianne Curran, RI Consent Decree Coordinator, To Leave Post Sept. 30, Citing Personal Reasons

By Gina Macris

                                                       This article has been updated .

Dianne Curran                        Photo By Anne Peters

Dianne Curran will step down Sept. 30 after seven months as Rhode Island’s consent decree coordinator, a post considered critical to success of the state’s 2014 agreement with the U.S Department Of Justice to reform Rhode Island’s programs for persons with developmental disabilities.

 “I am sad to leave such a competent and hard-working team that is committed to improving the lives of individuals with I/DD (intellectual and developmental disabilities),”  Curran said in a statement which cited "personal reasons" for her departure. She did not elaborate.

Curran is the third consent decree coordinator to serve since the agreement was signed in April, 2014. Curran was preceded by Mary Madden, who served from January, 2016, until the end of March of this year, overlapping Curran’s first month on the job. The first consent decree coordinator was Andrew McQuaide.

A spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said there is an interim plan to cover the duties of the consent decree coordinator. The spokeswoman, Jenna Mackevich, confirmed Curran's upcoming departure on behalf of the Executive Office of Health and Human Services (EOHHS), where Curran reports to Health and Human Services Secretary Eric J. Beane.

Until the state finds a qualified successor to Curran, an cross-agency Consent Decree Management Team will shoulder the coordinator's duties, according to an EOHHS spokeswoman, who elaborated on the interim plan. The inter-agency team includes various division leaders and legal staff, who meet regularly, said the spokeswoman, Ashley O'Shea.

The position of the consent decree coordinator is very important in ensuring cooperation among state agencies with responsibilities in implementing the agreement, according to an independent federal court monitor, Charles Moseley. Historically, the various agencies of state government have had the reputation of acting as bureaucratic “silos.”

In addition to BHDDH, the Rhode Island Department of Education and the Office of Rehabilitation Services in the Department of Human Services share responsibility for transforming a system of sheltered workshops and adult day care centers into a network of integrated, community-based services, with an emphasis on regular jobs and personal choice, to comply with the ADA.

With Madden’s arrival early in 2016, Moseley successfully pressed the state to move the position of consent decree coordinator out of BHDDH to the EOHHS, which has authority over both ORS and BHDDH.

Curran has a long and varied career as a disability rights lawyer dating back to 1980, both in Rhode Island and Massachusetts. She is a former deputy director at Rhode Island Legal Services and former supervising attorney at what is now the RI Disability Law Center. Working much of the last 20 years in  Massachusetts,  she was deputy general counsel in the Department of Social Services and then held the same position at the Department of Elementary and Secondary Education

This article has been updated to include details of the interim plan for the state to keep up with the duties of the consent decree coordinator while the state searches for a replacement to Dianne Curran.

Top Aide To RI Gov. Raimondo To Lead EOHHS; Policy Director For Providence Mayor To Run HHS

By Gina Macris

RI Governor Gina Raimondo has named Eric Beane, the top aide tasked with fixing the UHIP computer disaster, as Executive Secretary of Health and Human Services. 

Courtney Hawkins, chief policy officer for Providence Mayor Jorge Elorza, will become the new Director of the Department of Human Services (DHS). And Zach Sherman, Director of HealthSource RI, will take over the day-to-day management of the UHIP turnaround, according to a statement from Raimondo’s office issued May 12.

“Rhode islanders deserve and demand high-quality public services. I am confident the new leadership for our Health Cabinet will ensure better access to care and better outcomes for Rhode Islanders,” Raimondo said.

There has been a nearly complete turnover in the human services leadership since the start of the year, primarily because of problems with the UHIP computer system and with the management of the Department of Children, Youth and Families.

Beane has been with Raimondo since she took office in 2015, serving first as deputy chief of staff and then as chief operations officer, before the governor put him in charge of running DHS and turning around the $364-million Unified Health Infrastructure Project (UHIP) in January.

Hawkins, a Rhode Island native, “brings more than 15 years of experience working with social service agencies and in public policy” here and elsewhere, Raimondo said.

Hawkins has a bachelor’s degree from the University of Rhode Island and a master’s degree in social work from Columbia University. Before returning to Rhode Island in 2015, she worked as senior vice president at the now-bankrupt FEGS Health and Human Services, one of the largest social service agencies in New York City. The agency closed its doors in 2015.

UHIP, the largest information technology project ever undertaken by the state, has delayed eligibility decisions and healthcare and social service benefits for tens of thousands of Rhode Islanders – including some with developmental disabilities - since it was launched in September, 2016.

The botched rollout also cost the jobs of former EOHHS Secretary Elizabeth Roberts, the state’s chief digital officer, Thom Guertin, and the former DHS director, Melba Depena Affigne. 

In announcing the new appointments, Raimondo’s office said that Anya Radar Wallack, Acting Secretary of EOHHS since February, will return to the Brown University School of Public Health in June.

Beane is to start his new duties June 1 and Hawkins will take office June 12. Both appointments require confirmation by the state Senate.

Jennifer Wood, Leader of RI DD Consent Decree Compliance, To Leave State Government

Photo by Anne Peters

By Gina Macris

Jennifer L. Wood, largely responsible for accelerating Rhode Island’s lackluster response to a federal consent decree affecting adults with developmental disabilities, is leaving state government to become director of the Rhode Island Center for Justice.

The non-profit public interest law center works with community groups and the Roger Williams University School of Law to strengthen legal services and advocacy on issues that reflect the most pressing needs of low-income Rhode Islanders, including housing, immigration, and workers’ rights.  

Miriam Weizenbaum, the board chair for the Center for Justice,  announced the appointment Wednesday, May 3, saying that Wood’s legal background in public interest law, combined with her extensive experience in education and health and human servicesin state government, “makes her an ideal leader for the Center for Justice at a time when basic rights are under significant challenge.” 

Wood was deputy secretary and chief legal counsel to Elizabeth Roberts until Roberts resigned in mid-February as head of the Executive Office of Health and Human Services amid fallout from the UHIP fiasco, the botched roll-out of a computerized Medicaid benefits system. Thousands of Rhode Islanders were left without a wide range of benefits, including from food stamps, health coverage, subsidized child care, and even developmental disability services. At the time Roberts left, Wood was demoted to general counsel.

AshleyG. O’Shea, spokeswoman for OHHS, noted in a statement that Wood has devoted two decades of her life to state service and said, “We wish her the best in her new endeavor.” 

In March, the office of the U.S. Attorney in Providence issued a demand for UHIP documents, saying it is investigating the “allegation that false claims and/or payment for services and/or false statements in support of such payments have been submitted to the U.S. government.“

In a statement May 3, Wood indicated that since the November election, she has been considering a change in career to go back to her roots. As a lawyer in the private sector, her work emphasized civil rights and disability rights. She represented inmates at the Rhode Island Training School and special education students, among others who otherwise might have lacked a legal voice.

Wood joined state government in 1998 as chief of staff at the Rhode Island Department of Education, leaving in 2007 to work as Roberts’ second-in-command after the latter was elected Lieutenant Governor. When Governor Gina Raimondo appointed Roberts as Secretary of Health and Human Services in 2015, Wood followed as deputy secretary and chief legal counsel.

At the end of 2015, when U.S. District Court Judge John J. McConnell, Jr. signaled that he would personally oversee enforcement of the consent decree affecting daytime services for adults with developmental disabilities, Wood took charge of moving the implementation forward.

At that point, the agreement had brought virtually no change to the lives of adults with developmental disabilities since it was signed in April, 2014. By all accounts, Wood moved the implementation into high gear. 

O’Shea, the OHHS spokeswoman, said Wood is turning over her responsibilities in developmental disabilities to other officials, including Dianne Curran, a lawyer who is consent decree coordinator, and Kerri Zanchi, the new director of developmental disabilities. They are in touch with the federal court monitor and the U.S. Department of Justice weekly, according to O’Shea.

The consent decree requires the state replace sheltered workshops and segregated day programs with community-based supports so that adults with developmental disabilities may seek regular jobs and enjoy non-work activities in a more integrated way. The desegregation of services for everyone with disabilities was ordered by the U.S. Supreme Court in the Olmstead decision of 1999, which re-affirmed Title II of the Americans With Disabilities Act. 

RI Gov Appoints Wallack HHS Secretary; Wood To Continue to Lead DD Effort; UHIP Woes Continue

By Gina Macris

The Rhode Island Department of Human Services has begun re-hiring - months after it laid off about 70 workers in conjunction with the roll-out of a dysfunctional automated benefits system – to help Rhode Islanders who face hardships from delays and denials caused by the broken computer system.

That is but one step going forward that Governor Raimondo announced at a media briefing Wednesday, Feb. 15, when she released a scathing report on the Unified Healthcare Infrastructure Project, or UHIP, compiled by Eric Beane, the acting director of the DHS and her chief operating officer.

Blaming the vendor, Deloitte, for delivering a “defective system,” Raimondo also warned that it will take 60 to 70 days to stop the backlog in applications from growing and about a year to fix the system.  Beane’s report, completed over the last thirty days, showed the problem was much worse than she had previously believed, the Governor said. 

She apologized to Rhode Islanders for a situation she said was “unacceptable, inexcusable, and intolerable.”  

She introduced Anya Radar Wallack as the new Secretary of Health and Human Services  (HHS). Wallack formerly served as Medicaid director and the director of the state’s health insurance exchange under the Affordable Care Act.

Elizabeth Roberts, who had made a career of health care reform as a state senator, lieutenant governor and HHS secretary, submitted her resignation Wednesday. Raimondo accepted it, she said, because she agreed with Roberts that the problem needed a “fresh set of eyes.”

 Roberts had taken the stance that the system could be fixed quickly, despite the glitches, but Beane’sunvarnished analysis showed that not to be the case, Raimondo said. 

As Roberts’ long-time deputy, Jennifer Wood had been heavily involved in trying to fix the troubled UHIP rollout. Wood, who has served both as Deputy Secretary and General Counsel of HHS, will continue as General Counsel and will remain in charge of the state’s efforts to comply with the 2014 federal consent decree mandating integration of daytime services for adults with developmental disabilities, according to Beane.

Among thousands who have suffered hardships from the UHIP fiasco are individuals with developmental disabilities applying for adult services from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Last September, just as BHDDH solved an eligibility backlog in applications, many of them from young adults leaving high school, the introduction of UHIP caused months-long delays in the release of the money necessary to actually pay for approved services. In December, there were an estimated 100 young adults who had services delayed or expected services to be delayed as a result of the UHIP snafu, according to one informal report from the Rhode Island Parent Information Network.

Timely service is an issue of concern to an independent court monitor in the enforcement of a 2014 federal consent decree requiring community-based developmental disability services.

At the press conference, Beane said the backlog in all types of applications will continue to grow unless there is a “staffing surge to address the timelines.”

Beane’s report said Deloitte assured the state the computer system was ready to go live when it was not.

Raimondo said the state continues to withhold tens of millions of dollars (about $68 million of a $364 million project)  and is re-negotiating its contract with Deloitte. “It’s tense,” she said.  But she emphasized that UHIP can be fixed.

Raimondo said she has come to realize that the state needs to have more high-level officials with the technical expertise to analyze a vendor's claims and call out mistakes. In general, the public sector has been lacking in that regard, she said.

There had been warnings from federal officials that the computer system was not ready for a state-wide roll out, but human services officials decided against a try-out period.

Former DHS director Melba Depena Affigne and her chief digital officer Thom Guertin resigned in January under pressure from Raimondo. 

Click here to read Beane's report

Roberts Resigns as RI Health and Human Services Secretary; Wood's Future Role Unclear

By Gina Macris 

Rhode Island’s Secretary of Health and Human Services, Elizabeth Roberts, resigned late Tuesday, Feb. 14, over the quagmire created by UHIP, the state’s computerized human services benefits system.

Governor Gina Raimondo, in a press conference outside her office, said she met with Roberts “and she presented me with her resignation, which I accepted.”

“It was her choice, and I commend her for it. I think she realized, as I realized, that the challenges we’re having with UHIP require a new set of eyes, and a fresh set of eyes. “

Roberts’ top aide for many years, Jennifer Wood, who is Deputy Secretary of Health and Human Services, has been involved closely with the roll-out of the UHIP computer system and also has directed the state’s compliance effort with a 2014 federal consent decree affecting adults with developmental disabilities.

Asked whether Wood’s position is at all affected by the problems of the UHIP rollout, Raimondo’s spokesman, David Ortiz, said in an email that the Governor would give a “full update” on Wednesday.

The resignation came on the eve of a briefing Raimondo has scheduled for the media on Wednesday, Feb. 15, to discuss an analysis of UHIP conducted during the last month by her chief operating officer, Eric Beane, and steps that will be taken going forward.

“Secretary Roberts has been in public service for decades and has done so many good things for the people of Rhode Island,” Raimondo said.

In a statement, Raimondo said Roberts has “fought her entire career to expand access to affordable healthcare for more people. As my Secretary of Health and Human Services, Elizabeth played a key role in our successful efforts to drive Rhode Island’s uninsured rate to one of the lowest in the nation while reducing costs.”

Roberts was criticized by Nicholas A. Oliver of the Rhode Island Partnership for Home Care.

In a statement, he said that “Roberts’ rigid view of the state healthcare system blinded her from understanding the realities of operating healthcare practices and agencies in Rhode Island.”

“Because Roberts was a visionary stemming from her healthcare public policy interest as a state senator and a lieutenant governor without practical operational experience as a healthcare provider, her naivete and inexperience led to her ineffectiveness in the role of Secretary,” Oliver said.

Roberts’ is the third resignation connected to the $364 million computer fiasco. Melba Depena Affigne, director of the Department of Human Services, and her chief digital officer, Thom Guertin, resigned in January under pressure from Raimondo. 

Monitor Wants Mountains of Details to Push Compliance With RI Olmstead Consent Decree

By Gina Macris

If the state of Rhode Island were building a network of roads to help adults with developmental disabilities get to their jobs, town libraries, or classes at the local Y, then construction could be described as well underway.

But that’s not to say the infrastructure is complete and travelers are rushing to use these new highways on their way to richer lives. 

This image of a work in progress serves, in effect, as a snapshot of what a federal court monitor sees in an ongoing transformation of the state’s developmental disability service system. 

In a recent report to U.S. District Court Judge John J. McConnell, Jr., Charles Moseley says Rhode Island has made solid gains in its efforts to comply with a 2014 consent decree enforcing the Olmstead decision of the Americans with Disabilities Act, which requires disability-related services to be offered in the least restrictive setting that is therapeutically appropriate. And that setting is presumed to be the community. 

The state has increased funding by $11 million, filled key leadership posts, offered more training, and put into place policies and programs to help adults with developmental disabilities find jobs and enjoy activities in their communities.

Priorities for Compliance 

 While acknowledging these efforts, Moseley indicated the state is still out of compliance with the consent decree. Among his top recommendations, Moseley said the state must:

• Strengthen supported employment for young adults up to the age of 25. Job placements for young adults are “significantly below consent decree requirements,” he said.

• Increase funding to expand supported employment and community-based, integrated day services during the next fiscal year, beginning July 1, and in future budgets. The state “needs to take steps to ensure additional funding is available to address caseload increases” related to special education students moving to adult services, he said.

• Increase providers’ capacity to provide services. “Provider agencies do not yet have the numbers of trained staff needed to ensure the provision of services and supports required by the consent decree” Moseley said.

• Eliminate service delays.

Moseley says the Division of Developmental Disabilities (DDD) and the Office of Rehabilitative Services (ORS) have said that service providers can meet the need for employment and community –based supports required by the consent decree.

“But families of individuals with IDD (intellectual or developmental disabilities) who are requesting DDD services for the first time have reported to the monitor that access to needed supports has been prevented or delayed by providers who refuse to accept new referrals,” Moseley said.

“Provider refusals appear to be directly linked to DDD payment rates and rate setting practices,” he said.

Twenty-two of the state’s 36 private service providers have agreed to participate in a program of one-time bonuses paid for staff training, job placements, and job retention, according to state officials. 

That initiative is still accepting applicants and cannot yet be evaluated, Moseley said, although it is expected to ease the service gap over time.

Moseley found it “important to note,” however, that the state has not offered any other kinds of incentives to agencies that chose not to apply to the incentive program, or to providers that did not receive start-up costs to convert sheltered workshops and day programsto community-based operations.

Moseley is asking the state to give him an accounting by Feb. 28 of the number of clients who were refused or faced service delays between July and December of 2016, including the names of the agencies, the reasons given, the length of any delay, and the state’s recommendations for improving access to services.

He also gave notice that he will want a similar report for the three-month period between January and March, as well as another update at the end of June to use as a guide in determining whether recent initiatives put into place by the state are having a positive impact.

State is Playing Catch-up

Moseley submitted a 48-page report to McConnell Jan. 25 in anticipation of a hearing Feb. 14 on the status of the consent decree.

The state’s positive momentum, supported by the $11-million budget increase, is all the more significant because most of it has been accomplished in the year since McConnell became personally involved in the enforcement of the consent decree in January, 2016.

After McConnell signaled he would take the bench on the case, the direct day-to-day supervision of the developmental disabilities division has shifted from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals to Jennifer Wood, Deputy Secretary of the Executive Office of Health and Human Services.

Even though Wood has put efforts to comply with the consent decree into overdrive, the state is still playing catch-up with the progressively stiffer requirements of the highly prescriptive agreement, which was marked by two years of inactivity at the outset.

The consent decree, signed April 8, 2014, has a ten-year term. At the end of 2015, seeing little progress, the U.S. Department of Justice and the court monitor asked McConnell to take the case under his wing.

During the most recent hearing, in September, 2016, the state avoided contempt proceedings for failing to hit two targets. One of them, the disbursement of raises for direct service workers, was accomplished Oct. 1. The other was the lag in employment of young adults – a problem that has only grown bigger.  At the same time, McConnell said he relied on Moseley to hold the defendant’s “feet to the fire.”

Moseley Wants More Information

Even at the September hearing, Moseley was digging deeper. He pressed the state to better identify young adults and high school special education students who should be counted as members of the consent decree population and enjoy protections designed to prevent them from living lives of isolation.

Moseley’s report relies on data available as of Oct. 31, but he says the state subsequently informed him that the count of young adults who left school since the 2013-2014 academic year has increased by 350, from 151 to 501. 

The report says 29 of these young adults have received job placements, a number that is more than six months old. The consent decree required “all” members of this group to have at least part-time jobs by July 1, 2016.

The monitor continues to press DDD, ORS, and the Rhode Island Department of Education (RIDE) for more detailed information on several areas of implementation where he sees the state lagging.

By Feb. 28, Moseley wants reports on:

 Staff Training

• a plan outlining how DDD and ORS will provide the monitor regular updates on appropriate training for direct service workers at various agencies who provide daytime services. The current number of trained staff statewide, 396, is too low, he says.

Average Hours Worked

• a plan and strategy for increasing the average number of hours per week worked by individuals in supported employment. The current weekly average, 8.6 hours, falls far below the average 20 hours specified in the consent decree.  Implementation of the plan should begin March 1, Moseley says.

Career Development Plans

• an umbrella “operational plan” for 1) expanding critically-needed training for professionals and families on career development,  2) ensuring more than 3,000 individuals protected by the consent decree have high quality career development plans by June 30, and 3) making provisions for regular updates to the monitor on this topic beginning April 1. Currently, 774 individuals have career development plans, according to Moseley’s data.  These plans are intended not only to describe individualized long-term goals, but to include strategies and a sequence of real-life activities for helping individuals work toward those targets. Moseley said there are signs such details are lacking from many existing career development plans.

High School Internships

• data from RIDE and ORS showing the number of high school special education students who participate in at least two trial work experiences, each lasting a minimum of 60 days. RIDE has indicated it is keeping track of these numbers but has yet to provide the monitor with the information, Moseley says.

• data from DDD showing implementation of a so-called “transition timeline”, including notifications to families and other activities involving special education students in high school that prepare them for adult living.

Benefits Counseling

• a report from DDD on how it will ensure individuals deciding on jobs receive counseling about the way their earned income might affect the government assistance they receive, as well as evidence that the counseling is covering the required information. The monitor found that only 65 people had benefits counseling last June 30, the latest date for which statistics were available.

Moseley also noted that the state has developed a process for individuals to seek a variance if they want to opt out of employment, but no one has applied for one. He said he have more to say about the variance process by the end of the month but wants recommendations from the state by March 31 on ways to improve the variance process.

Employment First Task Force

Moseley addressed the future of the Employment First Task Force, saying it “has the potential to provide an independent and meaningful role in supporting the ability of the State to accomplish the reforms identified by the consent decree." 

“But change needs to take place if the task force is to achieve its full potential,” he said.

The consent decree intends the task force as a bridge between the community and the government, or as Moseley put it, “an independent, voluntary group of advocates and stakeholders who are not directly involved in state agency operations.”

While the consent decree says the group should make policy recommendations, it doesn’t say what areas the task force should research, or to whom it should make its recommendations, said Moseley. He also noted that it has no administrative staff or oversight from any state agency.

Moseley said he wants some changes in the task force “without compromising the separate and independent voice of advocates and stakeholders.”

Ultimately, he wants the task force to make annual reports for the monitor, the state, and the public on barriers to implementing the consent decree and ways to overcome them.

Moseley called on EOHHS to give the task force some staff support. And he asked Kevin Nerney, the task force chairman, and Jennifer Wood, the Deputy Secretary of EOHHS, to convene a small work group to map out the respective roles and responsibilities of the state and task force members and to report back to him by Feb. 28. 

Click here to read the entire monitor's report.

Governor's Budget Would Add Total of $10 million For Developmental Disabilities Through June, 2018

By Gina Macris

A new $6.8-million incentive program, intended to encourage service providers to help Rhode Islanders with developmental disabilities get and keep jobs, will become a permanent fixture of the annual budget, according to Jennifer Wood, Deputy Secretary of Health and Human Services.

That is one of several areas of Governor Gina Raimondo’s budget proposal that indicates the state is moving to increase services for individuals with developmental disabilities in keeping with a 2014 consent decree, which requires Rhode Island to expand their access to employment and other community activity over a ten-year period.  

Wood and other key officials, who are involved in reinventing the state’s developmental disability service system, elaborated on Raimondo’s proposed budget and the way it reflects evolving trends and programs during an hour-long interview with Developmental Disability News on Jan. 24. 

Between now and the end of the next fiscal year, which concludes June 30, 2018, Raimondo proposes to increase spending for developmental disability services by about $10 million, excluding restricted funds and capital expenses.

Of that total, $6 million in federal and state Medicaid funds would be used for five-percent increases to the average wages of direct support workers, and much of the rest would reflect more expensive levels of services needed by individuals with developmental disabilities than have been recognized in the past.

Overall, Raimondo asked the General Assembly to increase the current allocation for developmental disability services by nearly $4.4 million in this fiscal year, which ends in June, from about $246.2 million to $250.6 million.

Excluding restricted and capital accounts, the added amount available for services before June 30 would be nearly $3.8 million, according to a budget breakdown provided by EOHHS. In the budget cycle which ends in June, 2018, the Governor would add a total of about about $6.1 million, for $256.7 million in all spending on developmental disability services. Excluding the restricted and capital funds, the increase would be about $6.6 million.  

All Funds vs Operating Budget

TABLE COURTESY OF EOHHS

    GR=state funds     FF= federal funds

The primary reasons that developmental disability services are expected to be more costly include:

•  The need for a better-paid, more stable workforce, funded with a 5 percent increases in direct care wages, or a total of $6 million 

• · Additional staff time spent on job hunting and job support for their clients, reflected in the new $6.8 million individualized supported employment program that is already part of approved spending

• A new version of the process for assessing individual needs appears to indicate that more supports are required than have been recognized in the past.

Supported Employment Program Has Begun Operations

Until now, all individuals with developmental disabilities who sought help in finding jobs in the community had to give up other kinds of services, with the dollar value of their personal funding authorizations remaining the same. But those enrolled in the new “person-centered” supported employment program, now accepting applicants, will get job support in addition to their other services, according to an EOHHS spokeswoman. The program is expected to involve about 200 clients.

The supported employment program was funded by the General Assembly with a $6.8 million allocation for the current fiscal year. But that sum has been untouched while the state has figured out how the program will work.

The program is poised to make its first disbursements to service providers, including incentive payments for the placement of two individuals in jobs in January. said Tracey Cunningham, Chief Employment Specialist in the Division of Disabilities at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The original $6.8 million allocation is expected to fund the incentive program into the second half of the fiscal year ending in June, 2018, according to an EOHHS spokeswoman.

The program staff will evaluate the results of the first operational year to determine how much money it will need to continue, said Brian Gosselin, the Chief Strategy Officer at EOHHS. Wood promised assured continuous funding for the program.

“What we hope to learn in the first 12 months of this brand new program is what impact $6.8 million will have,” Gosselin said. It provides one-time incentive payments when staff complete a specific training program and clients are placed in jobs. The program also pays bonuses for employment retention, in two installments, after 90 and 180 days.  

Gosselin said he and his colleagues will determine whether the $6.8 million allocation was enough and will identify the successful features of the program that can be used in the second year.

He and Wood were asked why the 22 providers participating in the program must continue to use a fee-for-service reimbursement model which requires them to bill for daytime services in 15-minute increments.

Gosselin said that is the funding model that the federal Centers for Medicare and Medicaid services has approved for daytime developmental disability services in Rhode Island.

“In order to make any adjustments to that methodology we would have to go through a very long approval process with the federal government,” he said.

But he emphasized that the new performance-based aspect of the incentive program is “what we hope to learn from.”

A discussion of the fee-for-service model and whether it works for Rhode Island is part of a larger conversation – redesigning and renewing the state’s Medicaid waiver, which is expected to occur in 2018, Gosselin said.

Wood emphasized that she didn’t want to conflate two things. “One is Medicaid billing” and the other is “programmatic contracting,” she said.

“What we set forth to do was to create the first instance in Rhode Island of performance-based contracting for outcome-based services provided to individuals with developmental disabilities. We are super-excited about that,” she said. “That’s a whole new direction for this world.”

Wood also elaborated on the design and roll-out of supported employment in the context of a U.S. District Court order reinforcing the 2014 consent decree, which had set an Aug. 1 deadline for implementation of the performance-based supported employment program.

“Implementation is an ongoing activity,” Wood said. “We met the requirements of the Court order by filing with the monitor and the Court and the DOJ (U.S. Department of Justice) the programmatic requirements” for the supported employment services program last summer, Wood said. The “person-centered” program is designed to put the needs and preferences of the client at the center of the job-hunting and support process.

Since the summer, state officials have met with providers, drawn up contracts and finalized them, she said. The next phase of implementation is enrolling clients, Wood said.

“We are actually quite proud of the fact that we can bring this program up in what in government circles is lightning speed,” she said, “and to do it in a really reliable, viable, and responsible way.”  .

“I know it may not appear that way to the public,” Wood said.  She apparently alluded to public criticism of the program, which was not completely fleshed out when it was first presented to providers in November and was not widely understood by families who direct individualized services for a loved one.

Wage Increase Intended to Help Stabilize Workforce

Governor Raimondo’s proposed $6 million for wage increases for direct care workers would provide about 5 percent more in the hourly rate, before taxes, in the fiscal year beginning July 1.

For the current fiscal year, the General Assembly approved about $5 million for a pay raise which boosted the average hourly rate from $10.82 to $11.18.   Another 5 percent would raise the average hourly rate by 56 cents to $11.74.

Governor Raimondo’s latest proposal also would provide an increase for employer-related costs for direct care workers, Wood said. 

Raimondo had been asked to include another pay increase for direct care workers in her budget plan from State Sen. Louis DiPalma, D-Middletown, First Vice Chairman of the Senate Finance Committee.

DiPalma said in a recent telephone interview that he considers Raimondo’s wage proposal for Fiscal 2018 the first step in a five-year effort to raise direct care salaries to $15 an hour.

In the meantime, the minimum wage may well be on the rise as well. The Governor’s budget proposal would increase it from $9.60 to $10.50, while Rep. Leonidas P. Raptakis, (D- Coventry, West Greenwich, and East Greenwich) has countered with a $10 minimum wage bill.

 DiPalma was asked whether a $15 hourly rate would be enough for the direct care workers in five years.

He said he plans to introduce legislation this year to link the wages of direct care workers to the consumer price index.

“We can’t tie the hands of future legislatures,” by committing them to specific dollar amounts in advance, DiPalma said.

“It’s a case of wanting people to have an appreciation for the intent of what we want to do” in placing value on the work of those who care for some of the state’s most vulnerable citizens, he said.  

A spokeswoman for the Executive Office of Health and Human Services said DiPalma and Senate President M. Teresa Paiva Weed, who backs the so-called “15 in 5” plan, “have been important partners in advocating for investments in our direct care workforce.”

“We look forward to working with our partners in the General Assembly to implement our second wage increase this year, as well as increases over multiple years as possible,” said the spokeswoman, Sophie O'Connell.

A year ago, a conference hosted by the Sherlock Center on Disabilities at Rhode Island College concluded that higher wages are a critical component in stabilizing the direct care workforce nationwide. In Rhode Island, the average annual turnover is about one third, according to the Community Provider Network of Rhode Island. That means that an adult with developmental disabilities, who relies on a good relationship with caregivers, can expect that every year, one out of every three staffers will  to the job.

Revised Individual Assessment Suggests Greater Cost

Unexpected  increases in billing from private service providers, as well as higher projections for future costs, would add an additional $5 million to federal and state-funded Medicaid-services for existing clients in the current fiscal year, according to the Governor's budget brief. (Some of that net increase would be offset by other savings.) 

In November, the Division of Developmental Disabilities began using an updated version of an assessment called the Supports Intensity Scale (SIS) in determining the needs of individual clients. Those assessments are used to assign individual funding authorizations for support services.

“I personally am really thrilled” over the implementation of the new version, called the SIS-A, Wood said. “I know all my colleagues in government feel the same way about it.”

She acknowledged that “there have been all sorts of questions in the past about the validity and reliability of the state’s approach to implementing the SIS.”

And it’s an emotional topic because it’s not just an evaluation, but one linked to funding supports for a loved one, she said.

Since the SIS was implemented in 2011, time-consuming appeals of the results and the corresponding funding levels have become common, and appeals were often granted.

In 2014, the DOJ criticized the way the SIS was being implemented in the findings that laid the groundwork for the consent decree.

“The need to keep consumers’ resource allocations within budget may influence staff to administer the SIS in a way that reaches the pre-determined budgetary result,” the DOJ said at the time. 

In the recent interview, Wood said, “We feel much more comfortable and confident about the validity” of the SIS-A.

As it has been explained to her by the experts, she said, the new versions include refined questions that address some of the more complex needs that “people did not feel were being captured in the original version.”

Wood indicated that in general, higher scores on the SIS-A have  prompted developmental disability service officials to project higher individual funding authorizations. 

Apart from three new questions asking whether a client has hypertension, allergies or diabetes, the SIS-A adopts a risk assessment which includes five overarching questions with multiple parts intended to gauge critical health needs, self-injurious behavior or community safety issues. The questions on the risk assessment were released by the Division of Developmental Disabilities in the last week. Professionals say that with proper support, such risks can be overcome.

A lot of effort already has gone into retraining interviewers, Wood said, although “it will take us two to three years to find our way fully in this new assessment.”

Heather Mincey, social services administrator in the Division of Developmental Disabilities, said the training program has addressed the way interviewers ask questions. The Division of Developmental Disabilities is trying to be responsive to families, clients, and service providers who may not feel like they’re being heard or are unsure what kind of information the interviewer is trying to elicit, she said.

At the same, the Division of Developmental Disabilities is continuing an initiative begun a year ago to save about $1.7 million in Medicaid funding, including almost  $846,000 in state funds, from existing individual funding authorizations that exceed levels indicated in past SIS assessments.

There were so many complaints about the SIS in the latter part of 2014 and the first months of 2015 that BHDDH suspended an effort to rein in the exceptions in the fiscal year that ran from July 1, 2015 to June 30, 2016.  But the initiative to  to reduce those exceptions resumed for the current fiscal year, which began last July.

Wood said that budget figures for the current fiscal year and the one ending June 30, 2018, twice listing $845,750 in savings from realignment of individual funding authorizations, don’t represent a new initiative, but a continuation of the one already underway.

The appeal process remains an option for those who disagree with their allocations.

A new policy enacted by the state last July to respond to a judicial order says that all SIS assessments will be based solely on support needs. It also says that only the Director of Developmental Disabilities has the authority to grant authorizations that exceed SIS levels. Until now, appeals have been decided by a team of administrators.

Wood and other state officials have said they hope the SIS-A will result in a reduction in the number of appeals.

RI EOHHS Clarifies Status of Probationary DD License Involving Maher Center in Newport

By Gina Macris

The James L. Maher Center of Newport is correct in saying that the state has not downgraded the developmental disability service license of the entire agency, a spokeswoman for the Rhode Island Executive Office of Human Services (EOHHS) said Tuesday, Nov. 15. 

The Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has put one group home, at 228 Carroll Ave., on conditional, or probationary, status as a result of an internal investigation that found its staff abandoned a resident at Newport Hospital May 3, according to the spokeswoman.

But Jennifer Wood, the Deputy Secretary of Health and Human Services, says that "the accountability for the failure to comply with regulations and requirements at the Carroll Avenue group home resides with the management of the agency as a whole." 

The Maher Center has appealed the conditional license, which lasts for six months. During that period the agency is subject to heightened oversight by the state, according to Wood.

On Nov. 16, Wood elaborated: "In the currently pending matter BHDDH will prove that the agency did not operate that home consistent with the regulations, and unless they prove that they are operating consistent with the rules during the conditional license period, they may not be able to retain a license to operate that home in future.  

"If we also learn that other homes for which they are licensed are not operating consistent with the regulations, then we would take additional action regarding the licenses for those other facilities. We are very committed to more closely supervising the agency and in particular the management of the agency regarding the appropriate operation of the Carroll Avenue group home as well as all homes operated by the agency," Wood said Nov. 16.

The Maher Center will have its say before an EOHHS hearing officer, according to the EOHHS spokeswoman, but that session has not yet been scheduled. 

The Maher Center’s executive director, William Maraziti, issued a statement Nov. 10 denying the agency has ever abandoned any client. 

The agency is “extremely disappointed” with a “flawed investigation” that led to “unsubstantiated conclusions” by the BHDDH investigatory unit, according to the statement Nov. 10. 

Wood has said that even though the case involved the experience of just one client, the investigation raises “systemic issues” about the quality of care and respect for human rights.

The Maher Center has 16 licenses, according to the EOHHS spokeswoman. They cover: 

• 12 residential licenses (1 for each residential home)
• 1 agency license (the corporate “overall” license/oversight license)
• 2 center based day program licenses (for non-residential day programs)
• 1 service license (license that identifies all services that agency can provide)

Lack of Resources Underlies Problems with Supports Intensity Scale, Other RI DD Issues

photo by anne peters  

Eileen Vieira and Greg Mroczek both express concerns about the assessment used to determine funding for their adult children with developmental disabilities. 

By Gina Macris

The issue of resources – a scarcity of services and the money to finance them – ran like a thread through a public forum on Rhode Island’s developmental disability system Nov. 9 that brought together families, provider agencies and state officials. 

At the same time, participants applauded the willingness of new roster of state developmental disability officials to listen to their concerns.

Much of the discussion, during the meeting at the Cherry Hill Manor Nursing and Rehab Center in Johnston, concerned an assessment called the Supports Intensity Scale (SIS) that is used to assign individual funding packages to those persons receiving services.

“If there was adequate funding to pay for the needs” identified by the assessment, ”we would have much fewer problems with the SIS,” said Tom Kane, CEO of AccessPoint RI, a service agency.

“There’s not enough money there,” he said.

 Kane and others expressed skepticism about the accuracy of the assessment.

For example, Greg Mroczek said his son and daughter are very similar in their disabilities and needs, and yet they were assigned different funding levels.

“It flies in the face of the accuracy of the tool,” he said.

Eileen Vieira, who has a son with developmental disabilities, said some people who do the assessments “have no clue.”

They are not familiar with the person’s medical conditions or mental health issues or what is happening in the client’s life, she said. She said she did not believe the SIS captured her son’s need for behavioral support.

Heather Mincey, administrator in the Division of Developmental Disabilities, acknowledged that “a lot of times the SIS administrators did not get all of the information” necessary to make an accurate assessment of a person’s needs.

Heather Mincey

On Nov. 6, the Division switched over to a new form of the SIS which Mincey said she believes “will help a lot.” Called the SIS-A, the assessment is designed to capture behavioral and medical needs that were sometimes not apparent in results of the original SIS, according to Mincey. 

Kane said he has “never been a cheerleader for the SIS.”

The developer of the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD), maintains it differs from other assessments because it focuses not on shortcomings but on the supports an individual needs to be successful at a particular task.

Kane, however, said most family members and professionals in the field of developmental disabilities find it difficult to talk about the issues raised in the questions because “you have to examine what’s wrong” to arrive at the necessary supports.

“It’s a deficit-based tool,” he said.

A representative of AAIDD will visit Rhode Island to explain the SIS-A at an information and training session Nov. 17. (See related article.)

Mincey, meanwhile, encouraged parents to file appeals if they believe the SIS results for their sons or daughters are inaccurate – or if they have problems with a shortage of funds for transportation or other issues.

But Vieira indicated that the appeals are continuous and time-consuming, especially for parents who have full time jobs. “You have to appeal and you have to appeal,” she said. 

Brian Gosselin, Chief Strategy Officer for the Executive Office of Human Services, said developmental disabilities officials will use feedback from appeals of decisions on the SIS, along with experiences trying to solve other problems, to improve the system.

In whittling down a backlog of 224 applications for adult developmental disability services, for example, workers learned that nearly half the submissions did not contain all the required documentation, Gosselin said.  That experience will result in a redesign of the application process, he said.

Carla Russo

An independent court monitor in a federal consent decree mandating expansion of community-based services for adults with developmental disabilities has pressed the state to work through the backlog and identify all individuals aged 14 to 21 who might qualify for services after high school. 

One mother, Carla Russo, said her son left school in the 20013-2014 school year and still does not have adult services. 

Iraida Williams, an employee of the Sherlock Center on Disabilities at Rhode Island College, asked whether the application materials would be available in Spanish. Williams has appeared at several public forums on developmental disability services since April 2015, to ask the state to hire a Spanish-speaking social worker or interpreter who could field questions from non English-speaking families.

“That’s the type of feedback that we need,” Gosselin said.

tracey cunningham

Tracey Cunningham, Chief Employment Specialist at the Division of Disabilities, said 23 service providers have applied for a supported employment incentive program that is gearing up as a result of the consent decree.

Nearly every one of the 23 providers has talked about taking on new clients in the process, Cunningham said, although she didn't expect the program to begin operations until January.

If that many agencies do expand, it would be a significant shift from a system that has been in a holding pattern because of a shortage of funding. 

Cunningham said the Division of Disabilities also wants to hear from families who organize their own supports and might want to purchase supported employment services.

One mother, Mary Beth Cournoyer, said parents, who themselves have jobs, need to cover a certain number of hours of care for their sons and daughters and can’t afford to divert much, if any, funding to job development. 

Cunningham said that “we are looking” at the possibility of providing additional funding for supported employment services rather than requiring individuals to stretch their budgets.

Gosselin, meanwhile, said that state officials will be working with consultants from the National Association of State Directors of Developmental Disabilities Services for the next six months to try to come up with better ways to serve individuals and families and at the same time comply with new Medicaid regulations affecting individuals with developmental disabilities.

All photos by Anne Peters

Maher Center Disputes RI's Adverse Licensing Action In Formal Announcement of Appeal

By Gina Macris

The James L. Maher Center in Newport, RI., is “extremely disappointed” with “unsubstantiated conclusions” that it abandoned a young woman with developmental disabilities in its care at Newport Hospital last May, according to William Maraziti, the agency’s executive director.  

In a statement released Nov. 10, the agency says it has filed a formal appeal of an adverse licensing action taken by the RI Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. 

After a four-month inquiry, BHDDH investigators recommended in September that the department’s “licensing unit issue a conditional license to the James L. Maher Center,” according to their September report. 

By early October, licensing officials had followed through, according to a spokeswoman for the Executive Office of Health and Human Services. 

At the time, Jennifer Wood, the Deputy Secretary for Health and Human Services said that even though the case involved the experience of just one client, the investigation raises “systemic issues” about the quality of care and respect for human rights.

The findings demonstrated that the Maher Center is “not reliably following the rules and regulations” of the Division of Developmental Disabilities, Wood said. She said a conditional license, good for six months, is the equivalent of a probationary license.

But the Maher Center says that the “flawed investigation resulted in the downgrading to ‘conditional status’ the state license on one of the Maher Center’s 11 group homes.” 

“Recent media reports wrongly implied that the action was taken against the Maher Center’s agency license, which is the Center’s authority to provide services as a developmental disability organization,” the statement said. 

“By availing itself of the appeal process, the Maher Center intends to remove this unjust blemish on its 63-year record,” the statement continued. 

“We have never abandoned any of our participants – and certainly didn’t in this circumstance,” Maraziti said, calling the investigators’ report “inflammatory” and its allegations “without merit.”   

A spokeswoman for Wood confirmed in October that the Maher Center had begun the appeal process. 

The first step in the process is a meeting with investigators to determine if differences can be resolved, and the next step is a request for a hearing before an EOHHS hearing officer, according to the spokeswoman. 

The agency’s statement offered no details about the formal appeal, and through a spokesman, Maher Center officials declined to answer questions.   

Toward a Smoother Transition: RI Will Decide Early, By Age 17, Who Will Qualify for Adult DD Services

By Gina Macris

(This article has been updated.) 

For some Rhode Islanders with developmental disabilities, the shift between high school and the adult world has been likened to falling off a cliff.

Now, changes are underway to lay the groundwork for a smoother transition from high school to adult living, the latest being a new policy that the state will accept applications from individuals aged 16 and will determine their eligibility by the time they turn 17.

But it remains to be seen how far the state gets in delivering on its promise to a federal court to find jobs for every eligible young adult who can and wants to work by next June 30.  

One potential problem is that, despite small raises recently granted to direct care workers, their employers still may not be able to hire the staff necessary to add new clients. 

New, slightly higher reimbursement rates to private service providers reflect the raises but do not address continuing shortfalls in overhead costs borne by employers, according to a spokeswoman for some two dozen agencies.

For years, private providers have had trouble recruiting and retaining competent staff. A new employment incentive program, with a few exceptions, requires agencies to use existing funding to train workers, if necessary, and make job placements before collecting one-time bonuses. 

According to evidence presented in U.S. District Court last April, young adults with developmental disabilities have been dismissed abruptly from high school on their 21st birthdays and have tended to sit at home for weeks or months because adult services were not in place.

Rhode Island law says individuals with developmental disabilities are eligible for adult services at age 18, although decisions on eligibility often have been made a few months before the young people turned 21.

With many agencies declining to accept new clients, families found it difficult and time-consuming to arrange services.

When services finally were pulled together, they often fell short of participants’ and families’ expectations, according to what U.S. District Court Judge John J. McConnell heard in April.

Since the April hearing, the General Assembly has enacted a law sponsored by the Senate Finance Committee chairman, Daniel DaPonte, that requires school districts to keep those 21-year-olds in class until the end of the academic year.

More recently, the Executive Office of Human Services (EOHHS) has updated plans to better identify, enroll, and serve young adults eligible for developmental disability services provided by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Office of Rehabilitation Services (ORS). Those plans include the new “eligibility determination by 17” policy.

In a dramatic departure from past practice, parents of youngsters who are likely to be eligible will be encouraged to apply for adult services when their sons and daughters turn 16.

Consent Decree Drives Change

The changes respond to requirements of a 2014 federal consent decree which aims to move adults with developmental disabilities out of sheltered workshops and segregated day programs that violate the Olmstead decision of the U.S. Supreme Court.

In 1999, the high court found that services for individuals with disabilities must be provided in the least restrictive environment that is therapeutically appropriate, with that environment presumed to be the community.

During the latest judicial review of the consent decree in September, an independent court monitor, Charles Moseley, noted that since the consent decree went into effect in April, 2014, the state has failed to meet targets for placing young adults in regular jobs in the community, with the necessary supports. 

By July 1, 2016, the state was required to have placed all young adults who have left high school during the 2013-2014 academic year or later. At the time, 151 people were reported to be eligible, but the state’s total number of placements was 29.

Rather than hold a contempt hearing against the state, Judge McConnell has deferred to Moseley, who said was confident he could work with state officials to meet the employment goals.

Complicating the issue, the number of young adults in question has risen since July from 151 to 259. The Rhode Island Department of Education (RIDE) has updated its count of individuals with developmental disabilities who left school during the 2015-2016 school year and will continue to do so through June 30, 2017.

RIDE also has promised to expand the categories of individuals whose names it reports to BHDDH to more accurately reflect the total population of young people likely protected by the consent decree, according to Moseley’s most recent report to Judge McConnell Nov. 1.

Since the consent decree went into effect in 2014, RIDE has reported to BHDDH only the names of those with developmental disabilities who turn 21 and leave school.

Going forward, its count will include all those between the ages of 14 and 21 who have developmental disabilities, autism, or multiple disabilities that can be expected to restrict their ability to function independently as adults. The monitor wants RIDE to identify all those students by Nov. 15.

In the meantime, BHDDH, ORS, and RIDE will work together to notify all affected families of their protected status under terms of the consent decree and give them information about applying for services. (Click here for eligibility criteria in state law.) 

General Assembly Increased DD Budget

To shore up the state’s ability to provide services once adults are found eligible, the General Assembly has approved an hourly wage increase of 36 cents for direct care workers – a total of $5 million – and allocated another $6.8 million to foster supported employment.

In addition RI Senate leaders have said they want to raise the current average wage of front line workers from $11.18 to $15 an hour over five years.

But the state still faces continuing consent decree deadlines for placing adults with developmental disabilities in jobs, including about 50 former sheltered workshop employees by Jan. 1, as well as a yet-to-be–determined number of eligible young adults by June 30.  

The new $6.8 million supported employment program expects to begin disbursing funds in mid-November, according to an EOHHS document attached to Moseley’s latest filing with the court.

The program requires providers to have specially-trained employment teams in place to quality for the program and begin receiving a series of one-time bonuses. The bonuses reward the certification of employment specialists, job placements, and job retention for six months with totals that vary from about $3,500 to $15,750 per person, depending on the client’s age and the complexity of the disability.

The recent wage increases

The recent wage increases cover payroll–related taxes but do not add to the state’s reimbursement to private agencies for other aspects of employee overhead costs-taxes. Nor do the raises increase the pay of front-line supervisors or mid-level managers, according to Donna Martin., executive director of the Community Provider Network of Rhode Island, an association of 26 agencies.

Martin says the state allows agencies  35 percent of direct care workers’ salaries for such overhead costs, but CPNRI data “shows actual employee-related expense is in excess of 60 percent.”

Last spring, she told the General Assembly that her membership operates at an average loss of $5,500 a year for each employee.

do not change state’s reimbursement to private agencies for employer-related taxes and other costs, according to Donna Martin, executive director of the Community Provider Network of Rhode Island, an association of 26 agencies.

Last spring, she told the General Assembly that her membership operates at an average loss of $5,500 for each employee.

Because many agencies are not expanding their staff or accepting new clients, the parents of newly-eligible young adults increasingly are turning to so-called “self-directed” services, which allow them to design customized programs for their sons and daughters, a time-consuming process. The parents are responsible for organizing a program within their budget and choosing and supervising workers. A fiscal intermediary pays the bills.

BHDDH is encouraging these “self-directed” providers, as well as the established agencies, to apply for the one-time supported employment bonuses.  

The next opportunity for consumers and families to speak to state officials about the consent decree and developmental disability services in general is Wednesday, Nov.9 from 4 to 6 p.m at the Cherry Hill Manor Nursing and Rehab Center, 2 Cherry Hill Rd., Johnston.  

Judge McConnell has scheduled his next review of the consent decree for January 27 in U.S. District Court, Providence.

(The original version of this article inaccurately stated that recent raises to direct care workers did not include an increase for any aspect of employer-related costs.)  

RI Falls Short on Supports for Young Adults With DD; Court to Hear Consent Decree Status

By Gina Macris

While Rhode Island has made progress in complying with a 2014 federal consent decree, the U.S. Department of Justice and a court monitor say some requirements have not been met, including target numbers for finding jobs for young adults with developmental disabilities.

Of 151 individuals who have left special education programs at age 21 since the 2013-2014 academic year, the state has found supported employment for only 29, according to the monitor, Charles Moseley.

This issue, among others, will get an airing before U.S. District Court Judge John J. McConnell, Jr., Friday, Sept 16 at 2 p.m.

The state exceeded modest job placement goals for adults with developmental disabilities who had been in segregated day programs and sheltered workshops in violation of the Americans With Disabilities Act, Moseley said in remarks to McConnell submitted Sept. 15.

A total of 57 adults who formerly worked in sheltered workshops have found regular jobs in the community – with support – since the consent decree was signed April 8, 2014. That figure is 7 more than required by the consent decree at this point in the 10-year span of the agreement. 

Among those who had spent their time in segregated day programs, 118 have been placed in jobs in the community, Moseley said. So far, the consent decree requires only 25 supported employment placements from the day program population.

The monitor said state officials have had trouble identifying the total number of young people coming out of high school who are eligible for adult developmental disability services.

Moseley said the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) provides adult services to 101 of 151 young people with intellectual and developmental disabilities who have been identified by the Rhode Island Department of Education (RIDE) since the consent decree was signed.  

RIDE’s figures on eligibility don’t tell the whole story, the monitor said.

RIDE’s statistics cover individuals with intellectual and developmental disability as a primary diagnosis, but Moseley said RIDE has not counted others who may also qualify.

Young adults with autism, for example, may be eligible if they have no intellectual disabilities but have developmental problems that prevent them from connecting with other people and communicating what they know and can learn.

Moseley recommended that RIDE have until Nov. 15 to work with BHDDH, the state Office of Rehabilitation Services, and the Executive Office of Health and Human Services to identify all individuals leaving high school who are eligible for adult developmental disability services, saying the total is likely to increase.

He also said he wants RIDE, BHDDH, and ORS to work together to develop a strategy and timeline by Oct. 1 for ensuring employment supports for all young adults who are identified.

Besides dealing with issues particular to young adults, Friday’s hearing is expected to cover various initiatives related to supported employment for all those who come under the purview of the consent decree, according to joint remarks filed by lawyers for the state and the DOJ.

Rhode Island Considers Reorganizing BHDDH; Finding "Strong" DD Director Is Top Priority

By Gina Macris

The Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals  may undergo restructuring, if it is determined that a different organization of services would better serve the  needs of it clients, a spokeswoman for the Executive Office of Health and Human Services (EOHHS) confirmed on Friday, Sept. 9  

Asked whether a departmental reorganization is on the table, Sophie O’Connell replied in an email: “No decisions have been made, but we are considering the option to make sure that we are delivering the best quality care and services to some of the most vulnerable people in our state.” 

Before she left in June, former BHDDH Director Maria Montanaro recommended that BHDDH be split up. The Eleanor Slater Hospital should be run by a dedicated board of directors, she said, while mental health and developmental disability services each should have a commissioner under the direct supervision of EOHHS. 

Such sweeping changes would require gubernatorial and legislative approval. On an ad-hoc basis, however, EOHHS has established direct oversight of the Division of Disabilities in recent months, primarily in response to the demands of a federal consent decree. 

O’Connell said there is no timeline for recruiting a permanent BHDDH director while EOHHS and BHDDH work on a plan that would take into account “how we can most effectively blend fragmented program, policy and funding streams to ensure Rhode Islanders are receiving the best possible care and services.”  Rebecca Boss serves as interim director of BHDDH. 

“Secretary (Elizabeth) Roberts as well as the BHDDH and EOHHS management teams are personally committed to ensuring continued progress on the important reforms taking place at BHDDH. This includes the ongoing work to improve services for individuals living with developmental disabilities and to recruit talented DD leadership into the agency,” O’Connell said. 

“Our most pressing concern at the present moment is recruiting a strong leader for the Division of Developmental Disabilities,” she said. 

The developmental disability director’s post is particularly critical as the state tries to comply with the federal consent decree by shifting away from sheltered workshops and segregated day programs toward integrated employment and community-based non-work activities. 

The division has been without a permanent director since July 22 when Charles Williams retired.

Jane Gallivan, who was coaxed out of retirement to serve as interim director of developmental disabilities, will step down at the end of the month because of family responsibilities, according to O’Connell. 

Although Gallivan will remain a consultant – primarily a long-distance one – the state has not announced who will administer developmental disability services in the short term or when a new director might be named. 

 As of Friday, September 9, the post had not been advertised on the state’s employment website. Nor has a search committee been seated.  

In response to repeated inquiries, over the past week, O’Connell said that Gallivan would providemore information Sept. 14 about the search for a director for the division. 

Gallivan, former developmental disabilities director in Maine and Delaware, plans to spend the winter in Florida with her 101-year-old mother, who has been staying on Cape Cod for the summer. 

Federal Court Hearing Sept. 16 Could Test RI's Compliance With DD Consent Decree

By Gina Macris

The status of Rhode Island’s compliance with a federal consent decree mandating integration of adults with intellectual and developmental disabilities is scheduled to go before U.S. District Court Judge John J. McConnell, Jr., on Sept. 16.

In response to McConnell’s active involvement in the case, which began in January, high-ranking state officials have begun an intense effort to lay the groundwork for compliance with the consent decree, which was signed in April, 2014.

On May 18 of this year, McConnell issued an order that held the state to numerous deadlines in July and August.

Whether the state has made sufficient progress over the summer may become clear during the upcoming review of the case in open court.

Prior to the Sept. 16 court session, the U.S. Department of Justice  and the independent court monitor can be expected to file written reports with the judge on their view of compliance issues, which they’ve done in the past.

They also may ask the judge to impose sanctions on the state if they believe it has not met the requirements of McConnell’s very prescriptive order of May 18.

The DOJ and Charles Moseley, the monitor, have been checking compliance with the consent decree on the basis of files they have selected from a list the state has provided of all individuals who fall under the purview of the agreement, about 3,000 people in all. The individuals are identified by a code that protects their privacy.

The case is extremely complex, with many related steps needed to achieve the long-term goal of the consent decree – to allow persons with disabilities the choice to participate as much as possible in regular employment and community activities. The agreement remains in effect until Jan. 1, 2024.

A July 1 Deadline for Supported Employment

One of those steps, spelled out in the consent decree itself, is a requirement that the state would find supported employment by July 1, 2016,  for all eligible individuals who left high school during the 2015-2016 school year. 

That population is estimated at a minimum of 74 individuals by the Rhode Island Department of Education (RIDE). 

In an interview Aug. 18, a state official could not say whether the employment requirement has been met because it does not have employment data as recent as July 1.

For now, the state is getting employment statistics from an “Employment and Day Activity Outcomes Survey” for adults with developmental disabilities that is done on a quarterly basis by the Sherlock Center on Disabilities at Rhode Island College.

The latest survey is a snapshot of what adults with disabilities were doing during their daytime hours in March, according to Jennifer Wood, Deputy Secretary of Health and Human Services.

Wood said statistics for July won’t be available until September.

Supports necessary for individuals to access regular employment vary with the needs of the person. They may include transportation, extra training that breaks down the job into small steps, or even a job coach who stays with the employee for the entire work shift. Typically, individuals with intellectual or developmental disabilities employed in the community work part time.

A Pay Raise For Direct Service Workers

During July, the state has submitted numerous documents that could have a bearing on the September court session, which is officially termed a “status conference.” 

Among the state’s filings is a progress report on what Wood has described as the “huge mathematical exercise” of delivering $5 million in pay raises- an average of $600 a year per person before taxes  – to direct service workers and job coaches.

Pay raises have been described as essential to stabilize a workforce of direct service workers who are asked to do demanding jobs for less than they would make at a fast food restaurant. Turnover ranges from about 35 percent to 80 percent annually, according to testimony before the General Assembly earlier this year.

At a recent community forum, Jane Gallivan, the interim Director of Developmental Disabilities, said workers should have checks by Oct. 1 that incorporate retroactive pay going back to the start of the current fiscal year, July 1.

The judge’s order gave the state until Aug. 1 to “appropriately increase salaries, benefits, training and supervision for Direct Support Professionals and Job Coaches.”

Performance-Based Bonus Plan Outlined

Another money issue involves government reimbursement paid to the  agencies themselves.

The state has filed a progress report with the court on plans to use $6.8 million in performance-based bonuses approved by the General Assembly in a two-phase program during the current fiscal year.

The program is initially planned to reward service providers when they place clients in jobs, after the workers have been employed for three months, and again at the six-month mark.  

These incremental bonuses would total an average of $15,750 per person, although the number of incentives and the dollar amounts may be adjusted, Wood has said. 

The state has not yet begun taking applications from providers to participate in the program, according to a spokeswoman for the Executive Office of Health and Human Services.

The incentive program is to be piloted until December with a limited number of private service providers.

The judge’s order required the state to implement the initial phase of the program by Aug. 1, and to turn in evidence that all providers have signed performance-based contracts by Dec. 31.

A Call For A New Reimbursement Model

McConnell also called on the state to implement a new reimbursement model by August 1 that is “sufficiently flexible to allow providers to be reimbursed for services rendered, including, but not limited to career exploration discovery services, vocational situational assessments, work trials, development of job seeker profiles, job search and placement, job training and support, support coordination, and transportation services.”

There is similar language in the consent decree, which specified that providers should be paid for job-related and job counseling work that is “not face-to-face with the client.”

Although performance bonuses will be an added “layer” of payment to service providers in the incentive program,  according to Wood, she has said that the current reimbursement model will remain in place.

“The unit service model is the unit service model,” she said in a recent interview.

For daytime services, this model requires providers to document the time workers spend with clients, face to face, in 15-minute increments. Providers are not paid for time clients are absent for any reason, even though they must staff their programs at the same level, regardless of varying attendance.

The judge’s order says the state must now have a “new service package design” that includes up-front individual financial authorizations for supported employment services.

Wood has said specific authorizations for supported employment services will be awarded to individual clients of providers enrolled in the performance bonus program – an estimated 200 people in all.

Except for that group, clients will continue to have to trade in other types of authorizations, like generic day services, to get employment-related supports, she said.

The State's Other Progress Reports

To comply with other requirements of the court order, the state has submitted:

• ·An overall project management plan involving the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), RIDE, and the Office of Rehabilitation Services (ORS) in the state Department of Human Services

• ·A transition timeline covering services to young people with developmental disabilities aged 14 to 21, including details on which agency and the type of worker who will provide the respective supports. 

• A comprehensive communications plan, including details on relaying the status of pending applications for adult developmental disability services to applicants and their families.

There are now 224 pending applications for adult services, a slight reduction from a backlog of about 237 reported in mid-May.

As of last Friday, however, eligibility workers had screened all but four of the 224 applications and assigned them to one of three categories; “likely eligible, likely ineligible” or “need further documentation,” Wood said.

This screening process sets the stage for decisions on applications in the first two categories to be made within 30 days, she said, enabling the state to retire the backlog by the end of September.

The screening also enables eligibility workers to promptly notify those who need to submit more information. 

In the past, those who needed to gather additional documentation might not have known it until their cases got to the top of the pile and were reviewed by the eligibility workers – an indefinite time period. 

The initial assessment makes the decision-making process much more efficient, Sophie O’Connell, a spokeswoman for EOHHS, said in a follow-up email.

EOHHS, which has taken over management of the Division of Disabilities at BHDDH since the beginning of the year, has heightened its oversight of the application screening process during the summer and used “data and performance management to keep our efforts on track,” O’Connell continued.

“The team met every day in the morning and the afternoon to set goals, review progress and problem solve as needed” during the screening process, she said.

At a hearing in April, the DOJ presented evidence that some individuals turning 21 were waiting extensive periods of time to receive notice of eligibility for adult services and then had trouble finding programs suited to their needs.

The consent decree requires that community-based services, including supported employment, be in place for individuals with developmental disabilities when they reach the age of 18. 

State law also says that individuals with developmental disabilities are eligible for adult services at age 18, although as a practical matter, it is not uncommon for them to remain in high school until age 21.

Nevertheless, the consent decree anticipates a seamless and individualized transition between school and the adult world.

McConnell will hear the status of consent decree compliance at 2 p.m. Sept. 16 in Courtroom 3 on the second floor of the federal courthouse on Kennedy Plaza in Providence, according to a notice in the case file.