RI Faces Uphill Climb Halfway Through DD Consent Decree Implementation

Bar graph on employment targets 60-30-19.JPG

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

The figures are re-calculated every three months.

state's employment chart as of 6-30-19.JPG

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

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

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

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

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

Trudy Chartier * all photos by Anne Peters

Trudy Chartier * all photos by Anne Peters

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

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

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

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

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

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

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

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

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

Kerri Zanchi

Kerri Zanchi

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

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

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

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

Rebecca Boss

Rebecca Boss

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

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

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

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

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

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

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

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

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

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

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

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

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

The concept of customization is not new.

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

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

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

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

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

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

Womazetta Jones

Womazetta Jones

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

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

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

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

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

Charles Moseley

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

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

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 DD Public Forum Raises Questions About Balancing Next Budget; No Firm Path Ahead

 l to r: Tracey Cunningham, Brian Gosselin, Rebecca Boss                                                                                                                                                        Photos By Anne Peters 

 l to r: Tracey Cunningham, Brian Gosselin, Rebecca Boss                                                                                                                                                        Photos By Anne Peters 

By Gina Macris

Rhode Island’s developmental disability agency “has no intention at this time to cut any services” to clients or reduce rates to private service providers, the departmental director told some 30 people gathered for a quarterly public forum at the Pilgrim Senior Center in Warwick Feb. 26.

Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), responded to a question from the audience about the budget proposal of Governor Gina Raimondo, who would slash a total of $21.4 million from developmental disability services, including $18.3 million in reimbursements to private providers.

Greg Mroczek, whose son and daughter both receive services from BHDDH, had asked about the budget in relation to the requirements of a 2014 federal consent decree.

 The Olmstead decree requires Rhode Island to transform its daytime services for adults with developmental disabilities from an over-reliance on sheltered workshops and segregated day programs to a system of integrated supports for employment and non-work activities that comply with the Americans With Disabilities Act.

Boss said that “presenting a balanced budget is a challenge” in any year. But it’s particularly challenging when the state faces a structural deficit of about $200 million in the fiscal year that begins July 1.   

Boss said that the governor, the Executive Office of Health and Human Services, and BHDDH are all committed to making sure that “the funding available to the dd (developmental disabilities) system is going to meet the needs of the individuals that we service.

“We believe we will have the services necessary for compliance with the consent decree,” she said. The consent decree covers daytime work and leisure activities but does not address residential services, the area where BHDDH has put an emphasis on cost-cutting in recent years.

Medicaid May Offer Path Forward  

Later in the meeting, Boss explained that the state is exploring the use of a Medicaid option that could help BHDDH balance its budget. The change, she said, also could achieve the programmatic goal of providing case management and coordination that is “free from funding conflicts and free from provider conflicts.” 

The Medicaid option involves the creation of a Health Home, the federal government’s name for an independent entity that would provide adults with developmental disabilities comprehensive care management, care coordination, health promotion, comprehensive transitional care, individual and family support, and referral to community and support services, Boss said.

For the first two years of operation, the Health Home would be supported with a 90 percent federal Medicaid match for every state dollar spent, Boss explained. For Rhode Island’s current fiscal year, Medicaid reimburses Rhode Island at a rate of 51.34 percent for every state dollar spent. For the fiscal year beginning July 1, the so-called Federal Medical Assistance Percentage (FMAP) will be 52.30.

The 90 percent federal match of the Health Home has the potential to bring in millions more in federal Medicaid dollars, but only for a limited period of time.

Boss described the Health Home approach as a “pretty good opportunity.” She asked Brian Gosselin, Chief Strategic Officer for the Executive Office of Human Services, to speak in greater detail about the Health Home option, but Gosselin demurred. 

Because creating a Health Home for developmental disabilities would involve seeking an amendment to the Rhode Island Medicaid State Plan, BHDDH must seek permission from the General Assembly before filing an application, Boss explained.  The request for that authorization to move forward with an application is in Article 14 of the governor’s proposed budget for the fiscal year beginning July 1.

It would be next January at the earliest that BHDDH could try out a Health Home for developmental disability services, and “that might be optimistic,” Boss said.

RI Experience With 'Health Homes' 

Rhode Island already has three Health Homes, Boss said; one for those with mental illness, another for those with opioid addiction, and a third for children and families, called CEDARR Services.

Having been involved in the planning for two of the three Health Homes,  she said, “I can tell you this is a heavy lift” that involves a complicated application process and fundamental system-wide changes in the state’s approach to coordinating developmental disability services. 

John Susa, who has a son with developmental disabilities and is a member of the Rhode Island Developmental Disabilities Council, relayed what he saw when he participated in the creation of CEDARR, one of the three Health Homes mentioned by Boss.

“I thought it was a great idea,” Susa said. “However, as time has gone on, I’m less certain that it was a good idea. I found a tremendous amount of money spent on case management,” he said; people “going to a lot of meetings, but the end result was a very limited amount of output in terms of the impact on the quality of life.”

Boss said she valued Susa’s perspective. “Whatever happened in CEDARR, we’ll try not to do that,” she said.

At the same time, Boss said “it’s not definite” the state will pursue the Health Home option.

She did not say what else might be done to balance the budget.

One Medicaid Rule At Odds With Need For Care

Renee Doran

Renee Doran

Meanwhile, Renee Doran, whose adult daughter has developmental disabilities, said her daughter’s support person stayed with her when she had to go to the emergency room recently but was later denied pay for that day for the very reason that the worker was helping the young woman in the hospital setting and not in the community. 

As it turned out, her daughter was admitted to the hospital and Doran spent four days at her side. But what would have happened if she had been out of state or otherwise unavailable? Doran asked.

Heather Mincey, administrator in the Division of Developmental Disabilities (DDD), said the situation arose because community-based workers are paid from one Medicaid waiver while hospital-based workers are paid from another.

Mincey said the hospitals have the wherewithal to pay a developmental disability worker who must take a client to the emergency room.

And Boss said BHDDH can work with hospitals to let them know what services are needed. She said BHDDH often works with the state Department of Health, which oversees hospitals, and can “leverage that relationship” to make sure there is cooperation between hospitals and developmental disability services.

The public forum covered a gamut of topics, most of them related to the state’s incremental progress in meeting detailed requirements of the consent decree.

Focus on Supported Employment

Among other things, BHDDH announced an information session on employment-related services March 9 that will be tailored to the needs of individuals and families who do not get services from a particular agency but design their own programs.

Of about 3700 individuals receiving developmental disability services from BHDDH, roughly 500 are self-directed. Only about 8 self-directed individuals were able to participate in the first year of a performance-based supported employment program in 2017, according to Tracey Cunningham, the chief employment specialist at DDD.

Cunningham said the performance-based program is trying to attract more clients from the self-directed group in the current program year.

The session on March 9 for self-directed families and individuals will be from 9 to 11 a.m. in Room 126 of Barry Hall, 14 Harrington Rd., Cranston.

Anyone who is interested in information but can’t attend the session may call Cunningham at 462-3857, or email her at Tracey.Cunningham@bhddh.ri.gov

During 2017, 22 providers in the performance-based program offered employment services to 448 clients, Cunningham said. A total of 169 individuals found jobs, with only 24 of them losing employment, Cunningham said.

In the second year of the program, which offers enhanced performance payments, there are a total of 26 providers anticipating that they will be able to serve a maximum of 623 clients, she said. BHDDH has set aside $6.8 million for the performance-based supported employment program in the next budget.

But there have been difficulties training enough staff to provide supported employment services. BHDDH data presented at the forum showed a 31 percent vacancy rate in the full complement of staff – 234 positions – needed to maximize the program.  

Specially trained job coaches and other employment-related specialists for the performance-based program come from the direct care workforce, which is poorly paid and experiences high turnover.

The performance-based program is intended to boost the number of adults with developmental disabilities in regular jobs to help the state comply with the consent decree.

During 2017, the state met or exceeded the consent decree targets for employment in two of three categories: those who historically have spent their days in center-based care and sheltered workshop employees, according to figures provided by BHDDH.

There is one sheltered workshop left in Rhode Island and it will close sometime this year, said Tina Spears, the new consent decree coordinator.

The state has been lagging for some time in the number of young adults it has helped place in jobs. By now it was to have placed all of a total of 413 young adults recognized by the consent decree as having left school between 2013 and 2016.

At the end of 2017, the total number of  job holders in this young adult group was 177, according to the BHDDH data.  

 

 

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 

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.

 

 

Madden to Leave RI Consent Decree Post; Lawyer Dianne Curran Named New Coordinator

By Gina Macris

Mary Madden, the coordinator of Rhode Island’s efforts to comply with a federal consent decree mandating a transformation of developmental disability services, will step down from that post at the end of March.

Mary Madden                          File Photo

Mary Madden                          File Photo

In her place will be Dianne Curran, a longtime disability rights lawyer who has worked both in Rhode Island and Massachusetts, most recently as a consultant to the Massachusetts Department of Elementary and Secondary Education.

The announcement was part of a public community forum at the North Providence Senior Center Feb. 23 that also catalogued a series of system-wide changes undertaken in recent months, even though developmental disability services still fall short of the funding parents said is necessary to individualize supports for their sons and daughters.

And the audience was reminded that family stories are the ones that make the biggest impact with members of the General Assembly, who in the next several months will consider increases in the current budget and one for the fiscal year which begins July 1.

Curran, al awyer for both Rhode Island Legal Services and the RI Protection and Advocacy System (now the Disability Law Center) during the 1980s, also has served Massachusetts state government in various legal positions in education, human services and developmental disabilities departments. Her lengthy experience in that state includes a brief stint coordinating activities in response to consent decrees affecting adults with developmental disabilities and mental illness.

Madden, a veteran developmental disabilities professional in the private sector, became consent decree coordinator for Rhode Island in January, 2016, at a time when the state was just beginning to craft a response to the 2014 federal consent decree.

 On Thursday, Madden said that continuing as consent decree coordinator “was not in the long-term plan.”  Madden said she would not have returned to graduate studies in disabilitiesand public policy at Rhode Island College if she were not satisfied that that the state had gained momentum in responding to the consent decree. 

Most recently, Rhode Island recruited Kerri Zanchi as director of developmental disabilities after a six-month vacancy in that post.

Zanchi is a career administrator in developmental disability services, who, like Curran, has extensive experience in Massachusetts. She told the audience at Thursday’s forum that she was drawn to the Rhode Island job because of the state’s commitment to community-based services and the opportunity to make lasting change as the state shifts away from isolated day programs and sheltered workshops to comply with the consent decree. The decree requires the state to comply with the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that services for all persons with disabilities must be desegregated in accordance with the Americans With Disabilities Act.

Thursday’s session, attended by about 30 people, was notable for its low-key, conversational tone, a sharp departure from the angry complaints that dominated such meetings during 2016.

In the last six months, developmental disability officials reported, they have made several improvements, including the following:

  • speeded up the application process for adult services for individuals with developmental disabilities and adopted a policy to determine eligibility for adult services by the time special education students turn 17

• named a full time transition coordinator,  Carolee Leach, to work with high schools and the families of their special education students in preparing for adult life

• implemented a modest raise of about 36 cents an hour for direct care workers, as directed by the General Assembly

• introduced revisions to an assessment process used in determining individual funding allocations

• rolled out a supported employment incentive program for private service providers whohave placed 20 adults with developmental disabilities in jobs in the community since January

An independent court monitor in the consent decree case, however, has said in a recent report that the state must do much more to comply with the consent decree. (Click here for article on monitor’s latest report.)

At the meeting,  Zanchi, Madden and several other officials, including Jennifer Wood, General Counsel to the Office of Health and Human Services, heard from parents who said their adult children are lacking individualized community-based services.

Pat Abbate

Pat Abbate

Pat Abbate, who has a 46 year-old son with significant challenges, said the agency which serves him has good intentions but does not have enough financial resources to individualize services in the community

Tammy Russo, who has a 21 year-old son with disabilities, said he gets “no community services except for me.”

Greg Mroczek said 70 percent of his daughter’s program is in a day center isolated from the community.

Earlier in February, the same developmental disability officials heard a similar theme – a lack of adequate funding - from a mother who said she was forced into managing her daughter’s services because no agency would take her. Mary Genco said she asked 19 agencies, and each one said it had no nurse who wanted to deal with her daughter’s medical needs.

Genco, who is home with her daughter nearly all the time, said she represents growing minority of aging parents who are being “worn out” by adult children with extensive medical or behavioral support needs.

On Thursday, Pat Abbate put numbers on the funding gap. She said – and a check of the state’s Office of Management and Budget (OMB) website confirms – that funding for developmental disabilities lags behind the high of $260 million enacted by the General Assembly for the fiscal year between July 1, 2007 and June 30, 2008. At this time last year, the enacted budget was just shy of $231 million, according to OMB documents.

In response to a federal court order which said the state did not allocate enough money to implement the consent decree, Governor Gina Raimondo later pushed for increases, approved by the General Assembly, which boosted the bottom line to $246.2 million in the current fiscal year.

In her most recent budget proposal in January, Raimondo seeks an additional $4.4 million to finish the current fiscal year, for a total of $250.6 million. For the next fiscal year, beginning July 1, Raimondo has asked the General Assembly for $256.7 million.

Heather Mincey, a developmental disabilities administrator, said, “With our budget we try to advocate for as much money as we can.”

Brian Gosselin, chief strategic officer at OHHS, explained that the various departments of state government are active in their own advocacy, working with OMB and the Governor’s office, from July through December. But the state agencies don’t control the allocations, he said.

With the governor’s budget proposal now in the hands of the General Assembly, Gosselin and Mincey agreed, it’s vital that the community speak up.

“It’s important for families and advocates to be out there to speak to their representatives and let them know what your needs are,” Mincey said. 

A member of the audience, who said he works for a developmental disability service agency in Massachusetts, drove home Mincey's and Gosselin’s message.

The voice of families and advocates for developmental disability services is much stronger in Massachusetts than it is in Rhode Island, he said.

“When a family member calls up and gives them (legislators) a story, it makes such an impact,” he said. “I don’t think enough people get that point” in Rhode Island.

 

 

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

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.

 

 

 

 

Kerri Zanchi, Former Massachusetts Rehabilitation Official, Named DD Director for Rhode Island

Kerri Zanchi

By Gina Macris

Kerri Zanchi, a former high-level developmental disability service official in Massachusetts, has been named Rhode Island’s Director of Developmental Disabilities in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Zanchi, who has past ties to Rhode Island, begins her job here Jan. 23, according to Rebecca Boss, acting director of BHDDH.

 “We are certain that she’ll be a strong leader and we look forward to introducing her to you at our upcoming community forums” in February, Boss said.

“She has focused on quality services that encourage independence as well as community integration.” 

Boss said Zanchi embodies four characteristics at the top of the list of qualities identified in community forums held before the search: 

  • ·  hands-on experience with individuals living with developmental disabilities
  • ·   experience with government
  • ·  a deep understanding of how Medicaid works
  • ·  good communication skills

Zanchi, meanwhile, issued a statement saying she accepted the job because of the “tremendous opportunity” and “strong commitment” on the part of state leaders “to transform the development disability system to deliver high quality services that individuals and families deserve.”

She praised the “strong vision and clear goals” guiding the work of the developmental disability leadership team and said she found the community “engaged, with much expertise to offer as this work unfolds.”

“I look forward to partnering with individuals, families, the community and my colleagues in government to build on this momentum and move the service system in a direction that results in better services, better outcomes and more opportunities for all Rhode Islanders living with developmental disabilities,” Zanchi concluded.

Her salary will be $102,860, according to a spokeswoman for the Executive Office of Health and Human Services (EOHHS).

Zanchi, 43, is a native of Massachusetts who grew up in East Lyme, CT. She began her career working directly with adults with developmental disabilities in Rhode Island and received her master’s degree in social work from Rhode Island College in 1999.

After completing her studies, she worked at the administrative level in both the public and private sectors in Massachusetts, rising in 2014 to Assistant Commissioner of the Massachusetts Rehabilitation Commission, one of several agencies falling under the jurisdiction of that state’s Executive Office of Health and Human Services.

The Commission provides an array of services that promote empowerment and independence for individuals with disabilities, according to its mission statement. As Assistant Commissioner, Zanchi provided leadership and advocacy for six departments of state government focused on community living, covering the gamut of concerns from consumer issues to independent living, assistive technology, protection from abuse and specialized services for individuals with brain injuries, according to a resume released by Rhode Island officials.

The resume says she implemented performance management practices and contributed to cross-agency collaboration. These issues are relevant in Rhode Island because of the demands of a 2014 consent decree that requires various state agencies to work together to  desegregate daytime services for adults with developmental disabilities following specific goals set by the U.S. District Court. 

Zanchi left Massachusetts government in the fall of 2015, according to the Massachusetts Rehabilitation Commission’s annual report that year. She became Associate Executive Director of the Center for Living and Working, Inc., based in Worcester, leading the organization through a restructuring that emphasized staff development, quality improvement and performance-based outcomes.

In addition, she served as Coordinator of the Massachusetts Aging and Disabilities Resource Consortium for five partner agencies in central Massachusetts, strengthening community and provider collaborations, according to the resume.

Zanchi will succeed Charles Williams, who retired as Director of the Division of Developmental Disabilities last July 22.

The current budget for the Division of Developmental Disabilities is $246.2 million, providing services for a total of about 4,000 adults with intellectual and developmental disabilities, most of whom receive direct care from 36 private agencies under contract with the state.

The division director oversees a staff of about 350 that determines eligibility, the level of individual need, conducts case management, oversees the state-run group home system, and provides administrative support, according to the EOHHS spokeswoman.

It is expected Zanchi will play a key role in shaping the state’s implementation of the 2014 consent decree, which has come under close scrutiny by District Court Judge John J. McConnell Jr., after the federal Department of Justice challenged the state’s progress.

The EOHHS spokeswoman, Sophie O’Connell, said Zanchi “will work very closely with the leadership teams at BHDDH and EOHHS to move forward the Division’s work to achieve the terms of the consent decree and strengthen services for individuals with developmental disabilities.”

O’Connell noted that both the state’s Consent Decree Coordinator, Mary Madden, and the Deputy Secretary of Health and Human Services, Jennifer Wood, served on the search committee for the new director.

In the last year, since McConnell made it clear he would personally weigh in on the progress of the consent decree, Wood has taken the lead in assembling a team of officials to respond to the court’s requirements. She has a legal background in developmental disability law.

Besides Wood and Madden, the search committee for the developmental disability director included Brian Gosselin, Senior Strategy Officer at EOHHS; Jane Gallivan, former interim director of the Division of Developmental Disabilities and a consultant to the state; and Deanne Gagne, CEO/Founder of Bridge Building Services; Coordinator of Advocates in Action; and Assistant Coordinator of the Cross Disability Coalition.

A total of 74 applications were screened. Nine candidates were interviewed initially and four were called back for second interviews. The names of finalists – O’Connell did not say how many – were forwarded to Boss and to Health and Human Services Secretary Elizabeth Roberts, who made the final decision. 

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

photo by anne peters  

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

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

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

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

Gallivan Tapping National Network of DD Professionals to Spark Interest in RI Job

By Gina Macris

The search for a new director of developmental disability services in Rhode Island is well underway, even though the position has not yet been advertised. 

Jane Gallivan, the interim director, has been drumming up interest in the job through her national network of contacts in the field of developmental disability services.  In an interview Sept. 13, she said she has spoken to several likely candidates. 

One of the reasons Gallivan was recruited for the post on an interim basis was her ability to tap into the leadership network in developmental disability services across the country, according to Jennifer Wood, Deputy Secretary of Health and Human Services. 

Gallivan, a longtime director of developmental disabilities in Maine and more recently in Delaware, belongs to the National Association of State Directors of Developmental Disabilities Services (NASDDDS). 

Recent directors have not been required to have any particular expertise in serving adults with intellectual challenges. But that will change with revisions to the job description, which Gallivan said she hopes to complete by the end of the week. 

An ad Gallivan sent Thursday to NASDDDS said Rhode Island is looking for an experienced leader in the field who also has a track record in “affecting and driving change.”

The ad described Rhode Island as “undergoing a significant redesign in the delivery of services to individuals with developmental disabilities and their families,” by focusing on putting individual needs first, boosting employment, and supporting families better.

Gallivan said the NASDDDS notice will reach hundreds of professionals in the field.

She also plans to spread the word through the National Leadership Consortium on Developmental Disabilities at the University of Delaware, best known for training up-and-coming leaders in the field and helping build networks among them. 

Next week, the position will be posted on the state’s employment website and then the process of screening applications will begin, Gallivan said.

Gallivan will serve on the screening committee, along with Jennifer Wood, Deputy Secretary of Health and Human Services; Brian Gosselin, Chief Strategy Officer at the Executive Office of Human Services (EOHHS); and Mary Madden. 

Madden, based at EOHHS, coordinates the state’s efforts to comply with a federal consent decree that enforces a 1999 Olmstead decision of the U.S. Supreme Court mandating desegregation of developmental disability services nationwide. 

Madden indicated Tuesday during a meeting of a task force empowered by the 2014 consent decree that there may be at least one “listening forum” at which members of the screening committee would hear comments from the public on the characteristics most desired in a new director. 

The public may also write to the screening committee via the following email address: BHDDH.AskDD@bhddh.ri.gov , according to an EOHHS spokeswoman. 

Neither Madden nor Gallivan could offer an official timeline for the appointment of a new director. 

The screening committee will make recommendations to Elizabeth Roberts, Secretary of Health and Human Services; and Rebecca Boss, Interim Director of the Department of Behavioral Health, Developmental Disabilities and Hospitals, who will jointly make the selection.  

In the short term, Gallivan will remain a consultant but will step down as interim director at the end of September because of family responsibilities. 

While the Division of Developmental Disabilities awaits a new director, there will be a meeting of a team of administrators “every single morning” to go over issues that need follow-up that day, Gallivan said. 

The administrators include Madden, Gosselin, Heather Mincey, administrator of the division; Anne LeClerc, the program improvement chief, and Tracey Cunningham, the chief employment specialist, Gallivan said.

The new director will have the primary responsibility for implementing policy changes driven by the consent decree, which requires that the state move away from sheltered workshops and other segregated programs toward a system of individualized services based in the community. 

The division is part of BHDDH, but in the long run, it’s not clear where the director’s position will fit into the administrative structure. 

EOHHS has taken the lead in shaping efforts to respond to the consent decree. And a spokeswoman acknowledged that the office is considering restructuring BHDDH, which also has jurisdiction over mental and behavioral healthcare and public hospitals. 

Former BHDDH Director Maria Montanaro has said she does not believe all three kinds of services belong in one department. . 

There is no timeline for a search for a new BHDDH director, according to the spokeswoman, Sophie O’Connell. Rather, the new director of developmental disability services is a top priority, she has said. O'Connell declined to elaborate on any restructuring options EOHHS might be considering. Structural changes would have to be approved by the General Assembly.

RI Leadership in Developmental Disabilities Starts With Office of Health and Human Services

Jennifer Wood    Photo by Anne pETERS

Jennifer Wood    Photo by Anne pETERS

Gina Macris

Jennifer Wood, a longtime state policy wonk with an exacting work ethic and a broad reach, is orchestrating an effort to usher in a new era for Rhode Islanders with intellectual and developmental disabilities. 

And she’s creating a brand new management team to help her do it,  including Brian Gosselin, a veteran of former Massachusetts Governor Deval Patrick’s administration, to serve as Chief Strategy Officer.  

Wood is the Deputy Secretary of Health and Human Services, the top aide and top lawyer to Secretary Elizabeth Roberts, and a former chief of staff at the state Department of Education. 

Since January, when a federal judge agreed to oversee Rhode Island’s compliance with a consent decree, Wood has emerged at the forefront of the state’s response to the court case.

Wood says she is working “all day and every day” to fulfill the state’s pledge to integrate Rhode Island adults with intellectual and developmental disabilities into the larger community of work, living and leisure. 

That pledge was made two years ago when then-Governor Lincoln Chafee signed the consent decree, promising the federal government that Rhode Island would end the segregation of more than 3,400 adults, most of them working in sheltered workshops or spending their days in isolated programs.

The consent decree gets its authority from the 1999 Olmstead decision of the U.S. Supreme Court, which says individuals with intellectual or developmental disabilities must receive supports in the least restrictive setting that is therapeutically appropriate.

 In a recent interview, Wood emphasized that the goals of the consent decree “are the changes we should and would be making anyway, and it’s just beneficial in certain ways that we’re doing it within that structure.”

Wood presented most of the state’s testimony during a day-long evidentiary hearing on compliance before Judge John J. McConnell, Jr. in U.S. District Court in April.

Other evidence before McConnell included statements from families and advocates recounting failures in service and the opinion of a court monitor that Rhode Island must immediately lay groundwork to implement the consent decree if it is to achieve its ultimate goals by the time the agreement expires in 2024.

McConnell subsequently ordered the state to complete nearly two dozen tasks - each with a short-term deadline - or face contempt of court proceedings. (Read the order here.)

Several deadlines occurred July 1, and a new wave will hit at the end of the month or the beginning of August.

In the meantime, two top developmental disabilities officials announced their departure. Maria Montanaro, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) left June 24. Charles Williams, Director of the Division of Disabilities, will retire July 22. 

A third official, Andrew McQuaide, the Chief Transformation Officer at the Division of Disabilities, recently announced that he, too, will leave July 22. (Read related article here. ) 

“There’s a lot of change going on, especially in the leadership area,” Wood said.

“We’re the stability factor,” she said of the Executive Office of Health and Human Services.

Wood said she is building a very skilled management team, with leadership and authority coming from the Executive Office of Health and Human Services, to work on the consent decree and begin transforming a system mired in myth or what she calls “urban legend.”

“I use the metaphor that we’ve got a lot of plates spinning, and we need to move on all of these fronts at one time,” she said.

“We’ve got to prioritize the specific deadlines and commitments made in Court, but none of those things happen without a lot of other pieces being in place,” like getting “basic payment systems in place; getting basic communication systems in place with our own staff.”

 According to the consent decree itself, the appropriate staff were to have been trained in how to carry out its provisions by Sept. 1, 2014.

 “Our own staff, I think, need substantial orientation and awareness of what the consent decree actually requires, as opposed to what everyone says and thinks it requires, which are two different things,” Wood said.

“In the absence of clear and transparent communication, and authoritative communication, then, always, rumor, innuendo, and urban legend will rule the day,” she said.

Wood says the state needs to do better with its external communications because, “Families are out there wondering: What are you doing? When are you doing it?”

A communications plan - one of the tasks McConnell wanted done by July 1 - has been submitted to the federal court. Like the staff training, the communication plan should have been in place nearly two years ago, according to the consent decree. 

Wood emphasized that the communications plan is not a “static” document but a blueprint for action.                                                        

Much of what she and her staff have had to confront in trying to implement the consent decree is “gaps in basic management systems at BHDDH,” Wood said.

“I find it wholly unacceptable that sometimes what we’re talking about in court is: ‘Did an invoice get paid?’ ” Wood said.

 “One embarrassing example, which I shouldn’t even bring up, is ‘Can you get the consent decree monitor paid?’ ” Wood said.

 “I don’t trivialize the bureaucratic and administrative processes, because when those don’t work, nothing works,” Wood said.

 “Before I get out of bed in the morning, that should just be done,” she said, “but you know what? It’s bureaucracy, so you don’t always have that in place.”

McConnell’s detailed order, issued May 18, gave the state 12 calendar days to get itself up to date with payments due the court monitor, Charles Moseley, and the Consent Decree Coordinator, Mary Madden. The judge also said the state must never again miss a payday for either of them as long as their respective contracts run.

The order touched the tip of an iceberg, for the state pays its bills so slowly that many direct service providers must borrow to meet payroll while they wait for the reimbursement to which they are entitled.

“I hate to hear those stories, but, of course, I’ve heard those stories,” Wood responded.

The focus should not be on paying the bills, but on “transforming basic services that are fundamental to the success of our clients,” Wood said.

Initially, “we had struggles in getting people working together, to have everyone pointed in the same direction as to what the consent decree meant and how it should be implemented,” Wood said.

 Besides BHDDH, two other state agencies are directly involved in implementing the consent decree:  the Rhode Island Department of Education and the Office of Rehabilitation Services at the Department of Human Services.

(According to testimony during budget deliberations, there is a growing opinion that the Department of Labor at Training also should be at the table.)

Each agency is a like a silo with its own way of doing things, and the purpose of the Executive Office of Health and Human Services is to get them to function as an “integrated whole,” Wood said.

Wood explained the role of each member of the management team:

  • Brian Gosselin, new Senior Strategy Officer at EOHHS, will focus exclusively on developmental disabilities for the foreseeable future. He is an expert on performance-based contracting, which must be in place by August 1, according to McConnell’s order. Raises in staff wages and several other changes related to the financial arrangements the state has with private service providers also must be in place by Aug. 1. Gosselin is a fellow in the Government Performance Lab at the Kennedy School of Government at Harvard University. The Performance Lab, along with the National Association of State Directors of Developmental Disabilities Services, has consulted with the state in developing the new payment methods McConnell implemented. An accounting professional, Gosselin worked his way up in the Massachusetts budget office to the position of Chief of Staff in the Executive Office of Administration and Finance.
  • Dacia Read, until now the director of the Children’s Cabinet, has taken on an expanded role as Interagency Policy and Implementation Director at EOHHS. In that capacity, she is providing analysis and support for key initiatives at BHDDH and other agencies, according to a spokeswoman for Wood. 
  • Kim Paull, Director of Analytics at EOHHS, is working with Consent Decree Coordinator Madden and others to create an interim data solution to a requirement in McConnell’s order that the state make available client-specific information on employment and other services by the end of July.
  • Mary Madden was hired in January as EOHHS Consent Decree Coordinator in response to pressure from the court monitor and the U.S. Department of Justice that the implementation of the consent decree lacked leadership. Wood said she works closely with Madden on a daily basis.
  • Jane Gallivan, who will serve as acting Director of the Division of Developmental Disabilities, is newly retired from the same post in Delaware and has extensive experience in the equivalent position in Maine, where she led the implementation of a long-running federal consent decree in a de-institutionalization case..
  • BHDDH recently hired Tracey Cunningham as an Employment Specialist to lead a shift toward the supported employment services required by the consent decree. McConnell’s order gives the state until August 1 to hire a Program Developer or Quality Improvement Officer who will lead improvements in services and supports for clients. An existing quality improvement unit at BHDDH investigates neglect and abuse.
  • The Division of Disabilities at BHDDH will also have a new Transformation Officer and a yet-to-be named Chief Operations Officer.
  • Fiscal support will come from Christopher Feisthamel, the chief financial officer at BHDDH, and Adam Brousseau, the department’s fiscal analyst.