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.

Amy Grattan Named Director of Sherlock Center

Grattan Sherlock Center Photo

By Gina Macris

Amy Grattan, an expert in special education with a focus on early childhood, has been appointed director of the Paul V. Sherlock Center on Disabilities at Rhode Island College.

Grattan “brings a breadth of knowledge and experience in the field of disability and special education,” according to a Sherlock Center statement on her appointment.

Grattan will help ensure that “Rhode Island’s citizens with disabilities have a strong and vibrant advocate” and will “strengthen the many positive collaborative relationships with Rhode Island school systems and community partners,” the statement said.

The Sherlock Center, a federally funded University Center for Excellence in Developmental Disabilities (UCEDD), has served as a key resource as Rhode Island tries to transform its services for adults with developmental disabilities from a segregated model to an inclusive one to comply with the integration mandate of the Americans With Disabilities Act, as required by a 2014 civil rights consent decree.

The Sherlock Center has provided a philosophical framework on inclusion, as well as technical assistance, research and specialized training and educational programs for state employees, direct care workers, families and individuals who themselves receive developmental disability services.

A Sherlock Center staff member since 2005, Grattan has served as a consultant for initiatives aimed at improving early childhood education nationwide and in Rhode Island, collaborating with the state Department of Education and with local school districts. Currently, she also serves as a consultant on early childhood education for the Sherlock Center’s counterpart at the University of Connecticut.

In addition to early childhood education, she has expertise in alternate assessments, standards-based instruction, and helping teachers understand students significant disabilities and autism, accoring to the Sherlock Center statement.

Grattan also has served Rhode Island College as an adjunct professor in special education and early childhood education at the masters’ level. Her appointment became effective Oct. 21, according to a Sherlock Center spokeswoman.

Grattan succeeds A. Anthony Antosh, who had served as director of the Sherlock Center since its inception in 1993. Antosh was responsible for securing the federal grant which established the Sherlock Center as a UCEDD. The center was named after the late Paul V. Sherlock, a special education professor at Rhode Island College and state legislator who became widely known as a tireless advocate for Rhode Islanders with disabilities.

Search For RI DD Consent Decree Monitor Extended To Nov. 25; Antosh Among Candidates

By Gina Macris

A. Anthony Antosh, Director of the Sherlock Center on Disabilities at Rhode Island College, is among the candidates under consideration as the next independent court monitor responsible for overseeing implementation of a landmark civil rights decree requiring an overhaul of work and other daytime services for adults with developmental disabilities.

The search for a monitor is underway to succeed Charles Moseley, who retired Monday, Sept. 30.

In a July 23 letter to U.S. District Court Judge John J. McConnell, Jr., lawyers for the DOJ reported that they and officials of the state of Rhode Island “are gathering a list of candidates, with the goal on agreeing upon a candidate by the end of September 2019. We will file a notice with the Court once the Parties reach agreement, or in the event we reach an impasse. Dr. Moseley provided some suggested candidates, including Dr. Antosh, whom we are considering.”

In an email Sept. 30, Antosh has said that he is “aware my name has been floated. If appointed, I would be willing to serve.”

Judge McConnell has extended the search deadline from the end of September to Nov. 25. His order, dated Sept. 27, requires the state and the DOJ to give McConnell a progress report on the search every two weeks.

Antosh ***Photo By Anne Peters

Antosh, as the long-time director of the Sherlock Center on Disabilities at Rhode Island College, has played an integral role in numerous education and training efforts related to the integration of people with disabilities in their communities, the principle at the heart of the consent decree and the Integration Mandate of the Americans With Disabilities Act.

He also has overseen a critical quarterly survey assessing the quality of life of Rhode Islanders with developmental disabilities that has played an important role in helping the state provide data to the consent decree monitor.

Antosh, a lifetime advocate for people with developmental disabilities, was a plaintiff in the lawsuit that succeeded in shutting down the Ladd School in 1994, making Rhode Island the first to de-institutionalize the population.

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

By Gina Macris

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

Naomie Monplaisir Photo courtesy of Dan Habib

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

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

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

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

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

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

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

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

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

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

Challenging RI Consent Decree Deadline Looms Sept. 30 For Employment Of Young Adults With DD

By Gina Macris

The state of Rhode Island has already met or surpassed the 2018 supported employment goals for adults with developmental disabilities who were in sheltered workshops or segregated day programs when a federal civil rights consent decree was signed more than four years ago.

But it appears the state will not meet a looming Sept. 30 employment deadline for young people seeking adult services for the first time; specifically, 426 individuals who left high school special education programs between 2013 and  2016.

The prospect of the missed deadline – itself a two-year extension of the original -  suggests a lack of underlying funding, if not for specific employment–related services, then for the entire package of supports that newcomers usually seek when they look for an adult service provider.

For years, representatives of the three dozen private agencies reimbursed by the state Division of Developmental Disabilities (DDD) have told legislators that the amounts they are paid do not cover the actual costs of providing services.

Taking on new clients often means taking on additional debt, they have testified.

To be sure, DDD has pressed forward with reforms on a number of fronts, most prominently a program of enhanced reimbursement rates to private providers for supported employment services and performance payments for job placement and retention. The program was launched in January, 2017. 

 One agency that extended itself to embrace the new program, because officials believed it was the right thing to do, nevertheless ended the year with debt in that account in the high five figures, according to several sources.

In January of this year, the rules were relaxed to allow agencies to spend from the supported employment program to look for jobs for clients already on their caseload, providers have said.  

In 2018, young adult participation in the performance-based employment program  “has not significantly increased despite the increase in available funds for this population,” according to a second quarter report from the state to an independent court monitor in the consent decree case. The report has been obtained by Developmental Disability News.

The General Assembly initially allocated a total of $6.8 million in federal-state Medicaid funding that financed the supported employment program from January, 2017 through June, 2018, but more than half the money was not spent. At the end of June, BHDDH was scheduled to return to the state about $4.1 million, according to a House fiscal report.  State revenue accounts for about $2 million of the total.

As of June 30, a total of 231 young adults were employed, a figure that slightly exceeds the requirement that 50 percent of “youth exit” members have part-time jobs by that date.  

But it has taken the state four years to reach the half-way mark as it works toward the consent decree goal of full employment for young adults, leaving only three months to find jobs for the remaining half of the “youth exit” population – nearly 200 individuals. 

By comparison, the state has found part-time jobs for a total of 334 adults in segregated day programs – more than double the target for Jan. 1, 2019. In addition, 203 individuals who once worked in sheltered workshops now work in the community.  Those placements slightly exceed the 200 the consent decree requires by New Year’s Day.  (Taken together, the employment figures in the various categories do not include 18 clients whose past placements count toward consent decree goals but who no longer receive state services.)

RI DIVISIon of Developmental Disabilities

Among all those who got jobs through the supported employment program, 81 percent have remained employed for at least six months, according to the state.

The state also closed its last sheltered workshop, at the John E. Fogarty Center of North Providence, in the second quarter of the year, according to the state’s report. All participants moved either to competitive employment or day programs, a DDD spokeswoman said.  

While the supported employment program is only about jobs, young adults seeking a service provider for the first time tend to want something else that is more comprehensive, particularly since they work only an average of about 14 hours a week, according to the state’s figures.

They and their families generally want one provider to give them an array of work and non-work supports that take into account all their needs and preferences.

Some choose to bypass a service agency altogether and manage their own program of services, hiring staff and arranging schedules while a fiscal intermediary pays the bills from a funding authorization approved by the state.  Self-directed individuals have reported difficulties getting services from the supported employment program.

Of about 500 so-called “self-directed” individuals and families, it’s not clear how many run their own programs by choice and how many first sought and could not find an agency to provide services appropriate to their needs. The number of self-directed programs has grown in the last few years, by all accounts. In all, about 3,700 adults receive services funded by DDD.  

The impetus for the supported employment program came from an order issued in May, 2016, by  U.S. District Court Judge John J. McConnell, Jr., who presides over the case.

But the supported employment program now in place does not address basic funding mechanisms for adults with developmental disabilities, which, according to the U.S. Department of Justice, incentivize a segregated system of day services. The DOJ criticized both the funding and regulatory structures in the 2014 findings that laid the groundwork for the consent decree.

During the past year, BHDDH has engaged providers, families and advocates in an effort to rewrite DDD regulations, with an eye toward giving consumers of services and their providers greater flexibility to individualize programs and help meet the “integration mandate” of the Americans With Disabilities Act, which the consent decree is meant to enforce.

The proposed changes were submitted late in 2017 to the Office of Regulatory Reform – part of the Office of Management and Budget – but the draft regulations have not yet been posted for public comment on the website of the Secretary of State. 

Kevin Savage, the licensing administrator at BHDDH, said August 21 he expects the Office of Regulatory Reform to complete its work and release the regulations any day.

The federal court monitor in the case, Charles Moseley, has often expressed concern about teenagers and young adults with developmental disabilities because, without appropriate supports, they are at risk for a life of isolation once they leave high school.

The 2014 consent decree originally required the state to find jobs for all members of the young adult, or “youth exit” category,  by July 1, 2016. When the deadline arrived, however, only 29 individuals had jobs in a group that, at that time, numbered 151. 

After the monitor,  Charles Moseley, ordered the state to make sure it counted all young adults who met eligibility requirements for adult services under state law, the size of the “youth exit” population ballooned. It is now 426.

McConnell, the presiding judge, extended the employment deadline for all young adults to 2018. He required half of them to have jobs by June 30 – a goal that has been met – and the remaining 50 percent to find work by Sept. 30.

Going forward, the state said in its report, DDD is planning amendments to contracts with providers to use unspent supported employment money from the first half of the year, as well as other strategies to improve service to the young adult group.

One promising initiative, say state officials, is a cooperative agreement involving the Department of Labor and Training (DLT) and as many as 11 providers of developmental disability services, the Sherlock Center on Developmental Disabilities at Rhode Island College, and the Rhode Island Developmental Disabilities Council to forge relationships with business and generate at least 77 new jobs. The Business Innovation Factory will provide enhanced technical assistance for the overall project, financed through workforce development funds administrated by DLT.

DDD also raised the possibility that some young adults may ultimately choose not to work, a decision that must be documented in a “variance” to the state’s Employment First policy for adults with developmental disabilities. Employment – and the variance process – will be discussed at a public forum Sept. 11 at the East Providence Senior Activity Center, 610 Waterman Ave., East Providence, on Sept. 11.

RI Consent Decree Task Force Details Concerns About DD Services In Report To Federal Monitor

By Gina Macris

Many young adults with developmental disabilities in Rhode Island are still not receiving services to which they are entitled in a timely manner. Some are not getting services at all.

These conclusions have emerged as the consensus of the Employment First Task Force (EFTF) concerning Rhode Islanders with intellectual and developmental challenges who are trying to get regular jobs and other integrated services promised by a federal consent decree signed nearly four years ago.

The EFTF grew out of a provision of the 2014 federal consent decree which called for a bridge between the public and state government.  An independent court monitor on the case has made it clear that he expects the EFTF to provide a reality check from the community as the state tries to desegregate its services for adults with developmental disabilities to comply with the Americans With Disabilities Act.

The Task Force, including developmental disability professionals in the private sector, family members and consumers themselves, summarized its observations and recommendations covering the last half of 2017 in a recent progress report to the court monitor, Charles Moseley.

In 2016, under pressure from Moseley, the U.S. Department of Justice, and U.S. District Court Judge John J. McConnell, Jr., the state cleared a backlog of as many as 250 applications for adult services and developed an “eligibility by 17” policy.

The policy is intended to allow families plenty of time to plan a smooth transition for their sons and daughters to move from high school to the adult world. Most special education students eligible for adult services from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) stay in school until the age of 21.

Nearly a year after the “eligibility by 17” policy was announced, in July, 2017, EFTF members were still hearing comments relayed by special education professionals that some families of students were notified of their eligibility but weren’t told how much money they would be allocated in time to plan individualized and meaningful services.

In response to follow-up questions from Developmental Disability News, a BHDDH spokeswoman said in an email August 3 that the agency, working with the Rhode Island Department of Education, local school districts and the Rhode Island Parent Information Network,  is “able to adhere to (the state’s) ‘eligibility by 17 policy.’ ”

"Logjam Cited In Onset Of Adult Services

 But five days later, Claire Rosenbaum, an EFTF member who works as the adult services coordinator at the Sherlock Center on Disabilities at Rhode Island College, said at a public forum that “there seems to be a logjam” when families are trying to figure out how much money the state has awarded them and what it will buy.

At the time, Kerri Zanchi, director of the Division of Developmental Disabilities, (DDD) said her division aimed to give families a one year to plan before their son or daughter leaves left high school and needs needed adult services.

But Rosenbaum said a year is not long enough. Families may explore their options and settle on a particular agency, only to be told it cannot accept a new client with a particular disability or disabilities, she said.

That scenario is not uncommon. A precarious fiscal landscape has prompted many providers of developmental disability services to limit the number of new clients. 

Often, families turned down by one or more agencies  decide that the only way they can get a customized, high quality program is to organize it themselves and pay individual workers through a designated fiscal agent that handles the budget. Once that decision has been made, the families must begin planning all over again, Rosenbaum said, reiterating her conclusion that a year is not enough.

In December, DDD provided data about "eligibility by 17" that EFTF had requested six months earlier, including:

•  The number of applications and the ages of applicants
•  The number found eligible and the time span between application and eligibility determination
•  The number of newly eligible persons who received an initial needs assessment and the time span between the eligibility determination and the assessment interview
• The number who began receiving adult services and the time span from the completion of the needs assessment

In its report, EFTF said that DDD is “actively charting when and why gaps in the process appear.” 

The “gaps in the process” are not defined in the report. But it said Task Force members and state officials agreed to meet regularly to “determine what issues, if any, exist in this process and how to address these issues.”

Data released by BHDDH in quarterly public forums in November and February shed light on some of the requests that had been made by EFTF; the number of applications, the ages of the applicants, and a breakdown on the proportion found eligible. 

The “eligibility by 17” policy assumes that 16 and 17-year olds are submitting applications to BHDDH for adult services, but the most recent data indicates that the 16 and 17year-old age group accounted for only 11 percent of applications between August, 2016 and February 10, 2018. The lack of applications from younger students suggests that the “eligibility by 17” policy hasn’t been thoroughly communicated to families. (See chart below.) 

At the same time, one table indicates that the proportion of applications from 16 and 17 year-olds has been increasing in the last year.

At the most recent public forum, BHDDH officials also presented information on the proportion of applicants that have been found eligible for services. Of 635 applications received between August, 2016 and Feb. 16, 2018, a total of 595 have been decided, including 264, or 44 percent, that were approved without any additional documentation.

The data indicated that an additional 158, or 27 percent, eventually would be approved once documentation was completed.  

Other Issues Raised By Task Force

The Task Force also expressed concerns about other issues. They include:

• A lengthy needs assessment done for each person eligible for services
• The ramifications of a push for more individualized, or “person-centered” services and the planning that goes into them
• An overall approach, dubbed “conflict-free,” in which planning, funding, and service delivery are handled by separate entities so that the best interests of individuals with developmental disabilities are not compromised. Currently, BHDDH handles funding and assessment and approves individual service plans developed by private agencies or independent developmental disability professionals.

Assessing Individual Needs  

 In November, 2016, the state implemented a revised needs assessment, called the SIS-A  (Supports Intensity Scale - A). The SIS-A had been promoted as more accurate than the previous version, and the Task Force concurred.

“Reports seem to indicate better results,” the report said.

At the same time, the Task Force found “ongoing challenges.”

For example, the Task Force said the SIS-A, developed by the American Association on Intellectual and Developmental Disabilities, was “not intended to be a funding mechanism.” That’s the purpose for which it is used in Rhode Island and many other states.

The Task Force recommended that an independent third party be chosen to provide “better interviews” and eliminate conflicts with funding decisions.

Highly detailed interviews with persons eligible for developmental disability services and their families are at the heart of the SIS-A assessment process. Both the assessment and the individual funding decisions are in the hands of BHDDH.

During the interviews, families are very reluctant to speak in great detail about the “deficits and struggles” of the individual at the center of the assessment process, but they don’t understand that this hesitance may result in lower funding for their loved one, the Task Force said.

“Families don’t understand that the first ten minutes of questions which capture exceptional medical and behavioral issues dictate a substantial difference in funding,” the report said.

The Task Force recommended that community organizations, like Advocates In Action, the Cross Disability Coalition, The Rhode Island Public Information Network, and a new parent advocacy group called  RI-FORCE, offer training to their constituencies on the interview process of the SIS-A.

A Call for True Conflict–Free Planning

The report tackled the challenges of so-called person-centered planning, in which the needs and preferences of an individual drive short-range and long-range career and life goals, regardless of the immediate limitations of program offerings of a particular agency.

 In person-centered planning, these individual needs and preferences also drive budgetary decisions, although it is generally understood that not all the supports needed by a person with developmental disabilities will be provided by paid staff.  

“It is our opinion that implementing real, conflict free person-centered planning could have a greater positive effect on people’s lives than the consent decree itself,” the Task Force wrote.

“While there has been some recent movement on the issue,” according to the report,  Rhode Island has been out of compliance for four years with Medicaid regulations for conflict-free individualized planning and management of services.

The Task Force said individuals with developmental disabilities, their families, and service providers all have shown resistance to the person-centered planning initiative now underway.

Some consumers and their families “view this as an additional layer of bureaucracy, while others would prefer all their dollars go to services rather than planning. Some family members are concerned that they would not be as involved using this process,” the report said.

Service providers, who are paid for planning individualized client programs, fear that they will not be able to meet the individualized needs of clients, particularly with limited funds, high staff turnover, and limited transportation options, according to the report.

There is a concern that “conflict-free” removes the staff who best know the individual from the planning process, the Task Force said.

It also expressed concern that there are no additional funds to provide conflict-free planning, saying that redistributing existing planning funds that now go to private providers “may destabilize already underfunded services.”

While calling for additional funding for person-centered planning, the Task Force also urged a continuation of a series of workshops on “person-centered” thinking and planning that is offered by the Sherlock Center on Disabilities at Rhode Island College to promote better communication on the topic. 

Some of the perceptions about person-centered planning “are based on misunderstandings and the general fear that comes with any change,” according to the report. “Communication on this issue will be extremely important.”

BHDDH is trying to address the issue of funding, both to achieve conflict-free planning and case management and to balance its budget in the next fiscal year.

Governor Gina Raimondo’s budget proposal seeks the General Assembly’s approval to amend the Medicaid State Plan so BHDDH can apply for a Health Home waiver that would provide a 90 percent reimbursement rate for person-centered planning and other specific services for two years. 

The earliest such a Health Home might begin operation, on a pilot basis, would be in January, 2019,  and that might be optimistic, according to Rebecca Boss, the BHDDH director.

Supported Employment At Issue

The Task Force, meanwhile, expressed concern about the overall effectiveness of a pilot program in supported employment that is intended to focus on the individual.

“Task Force members expressed concerns regarding the ‘person-centeredness’ of the program, the training requirements to participate, communications regarding the program, and overall effectiveness,” the report said.

Existing staff-to-client ratios prohibit individualizing job seekers’ daily and weekly schedules, according to the Task Force, although that comment did not refer specifically to the pilot program.  DDD also offers job-related services outside the demonstration program.

The Task Force recommended some of its members meet with state officials regularly to review data and develop strategies to ensure the success of the Person-Centered Supported Employment Performance Program.

Therap Gets RI Contract For DD Electronic Records

By Gina Macris

Therap Services of Waterbury, CT., a specialized information technology company, has won a contract worth $1,320,000 over three years, or $440,000 a year, to create an electronic case management system for the Rhode Island Division of Developmental Disabilities (DDD).

The conversion to electronic records is expected to make record keeping much simpler for state social workers and private providers and to greatly improve data collection for the U.S. District Court. Through an independent monitor, the Court is tracking implementation of integrated, community-based services for adults with developmental disabilities under provisions of a 2014 consent decree enforcing the U.S. Supreme Court’s Olmstead decision, which reinforces the Americans With Disabilities Act.

Kerri Zanchi, Director of Developmental Disabilities, could not say exactly how long the new system will take to roll out but estimated it might be 18 months to two years before it is fully implemented. Some parts of the system might be operational earlier, she said.

The electronic case management system will give state social workers and private service providers shared online access to the records of each client receiving federal and state-funded Medicaid services through the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Zanchi said Therap also offers a module to give families access to records, “but what it does and how we’ll use it, we’re not there yet. I couldn’t speak to that today,” she said in an interview in mid-September. A family module would not cost the state additional money, according to a spokeswoman for Zanchi.

Zanchi said DDD wants to build an electronic record system that responds to current operations and consent decree requirements.

“Our (DDD) system is changing and as it is changing we need to be evaluating the outcomes,” she said.

There is a work group which includes both state social workers and private service providers to help identify “the specific data needs” that must be built into the electronic records system, she said.

Rebecca Boss, the BHDDH director, said that “as much as we can do to expedite this, we will. We want to have this up and running as soon as possible.”

The lack of adequate data has made it difficult for the U.S. Department of Justice and the consent decree monitor to evaluate the state’s implementation efforts. About a year ago, the state devised an method of working around the limitations of the existing 30-year-old data system that can respond to specific questions from the monitor or the DOJ, but not on a real-time basis.

This patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College.

Therap and seven other vendors submitted applications for the electronic records contract in the fall of 2016. Zanchi and Boss said the contract was awarded at the end of the summer.

Therap also holds an electronic records contract for the investigatory unit of BHDDH, which deals with complaints of neglect and abuse. That contract was awarded in 2016, but no other details were immediately available.

Therap’s website describes the company as the leading provider of electronic health records for people with intellectual disabilities, with customers in 50 states and foreign countries.

This article has been updated with additional details on the Therap contract and those working with Therap to roll out the system. 

RI Still Lags in DD Consent Decree Compliance, But Shows Progress In Number of Job Placements

By Gina Macris

Rhode Island appears to be meeting almost 60 percent of court-mandated goals in placing adults with developmental disabilities in jobs paying at least minimum wage, according to newly-released figures which track the state’s progress through Sept. 30 of 2016.

The state had found jobs for 363 individuals, or 58.8 percent of the 651 placements required at that time, according to compliance figures the state submitted to an independent court monitor in accordance with a 2014 federal consent decree that requires community-based day services to correct violations of the Americans with Disabilities Act.

For one group of individuals protected by the consent decree- those in segregated day programs – the state has made triple the number of required placements. But for other groups, the going has been slower. Only about 22 percent of special education students "exiting" high school got jobs, far short of the 100 percent employment goal. The figures for a third group - adults who had been in so-called sheltered workshops – show 87 percent compliance with the benchmark for job placement at the end of September.

Source: State of Rhode Island 

Figures at the bottom of the table, set against a pale blue background, allow comparisons among the latest available job placement numbers Sept. 30 and those at the end of the first and second quarters of 2016.

It’s not surprising that the state does not meet overall compliance with the consent decree, Rhode Island began focusing on compliance only in the last 12 months – two years after the agreement went into effect,

In May, 2016, Judge John J. McConnell, Jr. of U.S. District Court reinforced the consent decree with an order addressing numerous shortcomings, including an inability to even get an accurate count of the number of individuals protected by the agreement.

McConnell required the state to create a “live” database, always up-to-date, on the population protected by the consent decree – at latest count 3,456 teenagers and adults – that the monitor and the U.S. Department of Justice could use to gauge compliance.

Such an up-to-the-minute database is in the works but has not yet been completed. In the interim, the  Executive Office of Health and Human Services has coordinated a cooperative effort involving three state agencies and the Sherlock Center on Disabilities at Rhode Island College to connect different sources of data so that the state can make detailed reports to the court, albeit with a time lag. The three state state agencies participating in the combined data effort are the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals; the Department of Education, and the Office of Rehabilitation Services.

The ten-year consent decree has progressively stiffer requirements, with the latest deadlines occurring Jan. 1. It is not yet known how well the state has done against these most recent benchmarks.

 Charles Moseley, the monitor,  has concluded that the state has “significantly improved its ability and capacity to gather, aggregate and analyze” data required by the consent decree.

Moseley submitted the state’s figures to McConnell March 3, supplementing two earlier reports. One made recommendations on stepping up job placements and other aspects of compliance. .The other made sweeping recommendations that would put emphasis on the needs of of individuals in the funding process for developmental disability services and would reorganize operations of the state Division of Developmental Disabilities to incorporate a seamless and continual quality improvement effort. Both reports have implications for greater costs.

All of Moseley’s recent reports are likely to come up during the next open-court hearing on the consent decree, now scheduled for 10 a.m. March 10 before McConnell. (Two hearings in January and February had been cancelled.)

The progress the state reported as of Sept. 30 reflect the efforts of privately-run service providers who for years have been working under significant financial and bureaucratic constraints that make it difficult for them to hunt for jobs for clients and support them once they find employment. 

Front-line workers make poverty-level wages, despite a pay increase approved by the General Assembly in 2016. The legislature also set aside $6.8 million to pay bonuses for new job placements and job retention and for specialized training completed by direct care workers. But that program was still on the drawing boards when the latest data was collected.

In his report on data, Moseley noted that the state did not reach goals for career development plans and benefits counseling. Benefits counseling is necessary to ensure individuals make informed choices about the way particular jobs would affect their government benefits, like supplemental security income (SSI.) Career development plans consider long-range goals, and the intermediate steps necessary to achieve them, in a way that aligns activities with individuals’ needs and interests.

Overall, about 43 percent of the entire consent decree population had career development plans. In one of the earlier reports to McConnell, Moseley was critical of the quality of those career development plans. 

Source: Charles Moseley, U.S. District Court Monitor

In the table above, "youth transition" refers to high school special education students likely to qualify for adult services, and "youth exit"refers to adults who have left school since 2013. Other categories refer to older adults who historically have been in segregated day programs or sheltered workshops. The letters CDP are an acronym for career development plan. 

Another table, below, shows that the state had complied with a requirement to provide benefits counseling to young adults with jobs but had failed to similarly advise more than half of older adults who had obtained jobs after 2012. The letters BP are an acronym for benefit plan.

Source: Charles Moseley, U.S. District Court Monitor

The state reported that those who had jobs worked an average of nearly 12 hours a week and made an average of about $10.00 an hour. The consent decree says the average work week should be 20 hours.  

The consent decree requires the state to integrate adults with developmental disabilities in their communities to comply with the 1999 Olmstead decision of the U.S. Supreme Court, which reaffirmed the rights of citizens with disabilities to receive services in the least restrictive environment that is therapeutically appropriate under provisions of the Americans With Disabilities Act. In Rhode Island in 2014, the U.S. Department of Justice found an over-reliance on sheltered workshops paying sub-minimum wages and on isolated day programs that did not offer their clients purposeful activities.

Click here for the monitor's data report.

Click here for the data the state submitted to the monitor.

Bigger DD Budget Appears "Safe", Families Upset by Lack of Funding and Services

Photo by Anne Peters

Donna Martin, Executive Director of the Community Network of Rhode island, left; and Kevin Nerney, Chairman of the Employment First Task Force, right. 

By Gina Macris

Despite positive signals about more state funding for developmental disability services in Rhode Island, members of the Employment First Task Force acknowledged May 10 that in general, families remain angry and upset with officials of the state’s primary service agency, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Task Force members who keep tabs on developmental disability issues on the General Assembly’s legislative agenda said that Governor Gina Raimondo’s plan for increased funding appears to be safe as the legislature approaches the final three or four weeks of its session.

Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), said she heard recently that more legislators  grasp the idea that “the consent decree is something they need to pay attention to,” even if they don’t understand all the details.

“That’s good to hear,“ said Charles Moseley, assigned to monitor the state’s implementation of a 2014 consent decree between the state and the U.S. Department of Justice. In the consent decree, the state agreed to reorganize daytime services for the developmental disabled to focus on community-based jobs and other activities to comply with the integration mandate of Title II of the Americans With Disabilities Act. (ADA)

U.S. District Court Judge John J. McConnell, Jr. has promised “swift and dramatic” action if the General Assembly does not provide sufficient funding to meet the immediate requirements of the decree.

At Tuesday’s task force meeting, informal updates on other disability-related topics suggested that, in general, families apparently are not yet realizing benefits of the consent decree, now at the start of the third year of its ten-year span.

There is widespread dissatisfaction among families about issues that reflect chronic underfunding, complicated by a lack of communication or miscommunication from the state, according to the tenor of comments shared at the meeting.

Kevin Nerney, chairman of the task force, expressed concern about individuals with developmental disabilities who had difficulty finding suitable services and had received letters from BHDDH saying they had been cut from the rolls because they hadn’t used their allocations.

Photo by Anne Peters 

Some of the concerns go back more than two years. Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities, (right) said she understood from informal conversations with BHDDH officials that about 400 individuals had received such letters as of February, 2014.  In the fall of 2015, when the topic was revisited by the Rhode Island Developmental Disabilities Council, a BHDDH official said another 50 individuals had been sent similar letters.

Rosenbaum said after Tuesday’s meeting that she understood BHDDH social workers tried to reconnect with individuals who they knew had been looking unsuccessfully for services.  The task force did not have more recent information on how many of those removed from the BHDDH client roster may have been reinstated.

Efforts to get additional information from BHDDH were unsuccessful Wednesday.

About two dozen private agencies providing most of the supports in Rhode Island to individuals with intellectual or developmental disabilities are operating at a loss and routinely tell prospective clients their programs are full.

Rosenbaum also said young adults eligible for BHDDH services are continuing to leave school and sit at home for months at a time because suitable adult programs are unavailable.

Although a spokeswoman for the state has said eligibility for adult services begins at age 18, Rosenbaum reiterated that, in actuality, BHDDH does not determine eligibility until about four to five months before applicants leave school or turn 21, leaving insufficient time to arrange services.  

In many cases, school departments provide services for intellectually and physically disabled students until they turn 21. Even so, under provisions of Rhode Island law, students with intellectual disabilities are eligible for adult services at the age of 18. Until students leave high school,  the consent decree envisions adult services as supplementary, such as facilitating and supporting vocational assessments and employment experiences, or actual part-time or summer job placements.

In addition, the adult service system would pay for the time of social workers and other professionals to help students and their families formulate individualized adult programs and find service providers.

 (BHDDH is in the process of negotiating a contract with the Rhode Island Parent Information Network to provide support to some young adults and their families who are grappling with transition issues, according to RIPIN’s representative on the Task Force, Sue Donovan.)

Rosenbaum, meanwhile, has filed a statement with U.S. District Court describing the problem, which figured in testimony in an April 8 evidentiary hearing before Judge McConnell. McConnell is poised to consider a request for corrective action to implement the consent decree. The request has not yet been filed.

While BHDDH officials insist there have been improvements in an interview procedure connected with periodic reviews of individual funding levels, Mary Beth Cournoyer, (below), a parent representative on the Task Force, said those assertions are not borne out by an informal survey she did of parents and others familiar with the process.

Photo by Anne Peters

Cournoyer said that she knows interviewers have been told “not to badger parents” by challenging the answers they give about their son’s or daughter’s needs.

Nevertheless, the interviewers continue to do so, said Cournoyer,

She said she has heard enough to recognize a pattern of argumentative interviews followed by reduced funding levels.

Others have complained about the so-called Supports Intensity Scale (SIS) interview and the associated funding decisions,  most recently at a “town hall” meeting April 27. There, the mere mention of the “SIS” by a BHDDH official triggered a round of laughter in an audience of about 100 people, mostly family members.

On that day, Charles Williams, director of the BHDDH Division of Disabilities, told parents to file an appeal if they disagree with the SIS results. Almost all, if not all, appeals are granted, he said.  

The SIS interview, based on a set of standard multiple choice questions, was designed by the American Association of Intellectual and Developmental Disabilities to gauge the supports or services needed to help an individual achieve his or her goals.

It does not take into account the risk of removing those supports.

The DOJ has found that that BHDDH has used the SIS to determine funding levels, and the consent decree prohibits the continuation of that practice.

The Employment First Task Force, required by a provision of the consent decree, is a group representing community agencies, individuals with disabilities and their families. Among other things, it was intended to serve as a bridge between state government and the public.

But public reaction to the consent decree, most prominently the backlash at the recent “town hall” meeting, has led Nerney, its chairman, to question the role of the task force as a filter for communications from the state.  

He said there hasn’t been an open line of communication with the state in the past, and he told the DOJ that “I don’t think this group should be a funnel.” Expanding on this point, Nerney said the real need is for “actual participation” in the plans that emerge from the state to comply with the consent decree.

“When BHDDH develops a plan, they should have stakeholders at the table,” he said. The more participants at the table, the more stakeholders there will be in the outcome, he said.

Others agreed. “Everybody wins when we strategize and work together,” said Kim Einloth, senior director at Perspectives Corporation, a private service provider.

Tom Kane, CEO of Access Point RI, another service provider, said he would like to have a plan “shared with everybody and shaped by everybody.”

 “We would like to have the ability to anticipate so we can pass information along as well. I, for one, am tired of being reactive,” he said. 

RI Families Blast Consent Decree and DD Services

By Gina Macris

Officials of Rhode Island’s developmental disability system hit blowback Wednesday from family members who oppose a 2014 federal consent decree that requires the state to move from sheltered workshops and segregated day programs to community-based work and leisure activities.

Debra Feller

Debra Feller, whose son has developmental disabilities, challenged the basis of the decree, saying it is contrary to the very law on which it is based, the Americans With Disabilities Act (ADA), by limiting, rather than expanding, opportunities for employment.

The decree, “violates the ADA“ for people like her son, who cannothandle outside employment, Feller said. She also contended that“sheltered workshops are being allowed to deteriorate at the expense of the consent decree.”

Michael Carroll, who works at a day facility in Middletown run by the James L. Maher Center of Newport, mocked a consent decree mandate that the state help adults with disabilities find and keep jobs in the community.

“The emperor has no clothes,” Carroll declared. “These jobs don’t exist. What happens then?”

The “same individuals who were working before at subminimum wage are now doing nothing,” Carroll said.

Their comments came during  a two-hour “town hall” meeting at the Buttonwoods Community Center on West Shore Road in Warwick, where about 100 consumers, their families and state officials discussed both the philosophical as well as the practical underpinnings of the consent decree.

The decree was signed after the U.S. Department of Justice found Rhode Island violated Title II of the ADA because it unnecessarily segregated adults with developmental disabilities in day programs or workshops that paid sub-minimum wage.

Title II of the ADA, underscored by the 1999 Olmstead decision of the U.S. Supreme Court, says that services must be provided to individuals with developmental or intellectual disabilities in the least restrictive setting that is appropriate.

Maria Montanaro, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), was to lead the session in Warwick, but she was ill Wednesday. Other BHDDH officials, including Andrew McQuaide, chief transformation officer, and Charles Williams, director of the Division of Developmental Disabilities, responded to the comments.

Thee sister of a man who is significantly impaired said the employment mandate of the consent decree was being carried out to an illogical extreme, at least in her brother’s case.

Lidia Goodinson said her brother is 56 years old and “doesn’t know the concept of work. ““Nobody would expect a two year-old to go out and get a job,” she said.

And yet her brother’s social worker told her that “to get funding, he has to look for work.”

Williams, of BHDDH, said, “Your response is to say that ‘I don’t believe he can work.’ “

Goodinson, however, said she did make herself clear. Nevertheless, the social worker said, “This is what the state requires,” according to Goodinson.

Williams asked Goodinson to give him the name of the social worker after the meeting.  

When Debra Feller asked whether “a sheltered workshop is a reasonable or appropriate environment for anybody,” the BHDDH transformation chief, McQuaide, said:  “The consent decree says it is not.”

McQuaide said there are many individuals with developmental disabilities who can and want to work in the community but can’t access the supports they need. The consent decree is designed to give them that choice.

“Nobody’s arguing about that,” Feller replied, but individuals like her son “can’t be left out of the conversation, either.”

The government is “stepping on their rights by saying they can’t be in a sheltered workshop,” Feller said. The audience applauded her remarks.

 McQuaide said the Department of Justice will say the consent decree “does not close sheltered workshops, but effectively it does.”

He said the state still has sheltered workshops, but at some time in the future, the state will no longer fund those.

He agreed with Feller that a sheltered workshop can provide space for a meaningful activity and foster long-lasting relationships, but he said those same meaningful relationships and activities can occur in the community.

As to Michael Carroll’s challenge that community-based jobs don’t exist, McQuaide said the employment targets in the consent decree are not “so astronomical” as to be difficult to achieve.

McQuaide scotched a rumor that the consent decree requires the state to close all segregated day facilities.

One center in Bristol is closing because its neighbor, Roger Williams University, wants to buy the property and the state has agreed to sell it, McQuaide said.  He said some of the people who attend that program will go to the Middletown center operated by the Maher Center and others will have community-based day programs.

McQuaide, after hearing the comments during the town meeting, said that “we have to do a much better job communicating about the consent decree.”  He offered to give Feller contact information for DOJ lawyers.

At the very least, the families’ comments underlined a gap between the promise of the consent decree and its day-to-day implementation in a service system hindered by poverty-level wages for professional staff workers and restrictive rules that prohibit flexibility and innovation.

Between 2008 and 2011, funding for developmental disability services was cut 20 percent, according to statistics presented in February to the state Senate Committee on Health and Human Services by the director of the Sherlock Center on Disabilities at Rhode Island College.  

A. Anthony Antosh said a smaller percentage of individuals with developmental disabilities had community-based jobs in 2015, a year after the consent decree was signed, than had been employed earlier at minimum wage or higher.  

“What has increased is the number of people who are essentially doing nothing” during the day, he told the committee.

After the consent decree was signed in 2014, sheltered workshops began closing abruptly under pressure from a previous BHDDH administration. Private agencies strapped for cash had no alternative programs already in place to support their clients in the transition to work and leisure activities in their communities.

At the Buttonwoods Community Center on Wednesday, BHDDH's Williams touched a nerve when he told parents they needed to be frank about their loved ones’ support needs during a periodic assessment called the Supports Intensity Scale (SIS).

Debra Feller said she was direct but “the SIS intake person refused to accept my answer,” a comment which again drew applause from the audience.

“I asked, ‘How long before I get this back?’ “ she said.  The BHDDH worker told her she didn’t know, “because I didn’t answer the questions the way she wanted,” Feller said.

The Department of Justice found that that the SIS was being used improperly as a funding mechanism. The multiple choice questionnaire was developed by the American Association of Intellectual and Developmental Disabilities as a guide in defining the supports necessary to help a particular person achieve his or her individualized goals.

The consent decree requires an outside health consulting firm to do an annual analysis of the way BHDDH uses the SIS and to submit the report to the independent court monitor in the case.

Devlin Allen, who hosts a man with developmental disabilities as a shared living provider, said that after a recent SIS, his client’s funding was cut by $8,000 a year, a 24 percent cut in reimbursement, which makes it “very difficult to maintain that  person in my home.” 

“They’re cutting the funding because we’re doing a good job with an individual,” he said. The SIS should take into account that if the supports are removed, a client’s level of need will increase, he said.

Williams told Allen to file an appeal. Almost all, if not all, appeals are granted, Williams said.

In closing, McQuaide said Montanaro, the department director, would reschedule her appearance for sometime in May. 

Court to Hear Evidence Friday on RI Compliance with Olmstead Decree

By Gina Macris

The state of Rhode Island says it is in “substantial compliance” with a 2014 consent decree  mandating a decade-long transformation of services for people with developmental disabilities to conform with the Americans With Disabilities Act.

That assertion, made in a compliance report filed April 1 in U.S. District Court, will face close scrutiny in an evidentiary hearing scheduled for April 8 before Judge John J. McConnell, Jr.

The judge also has in hand a recent report from the court monitor in the case, Charles Moseley, that expresses doubts about the state’s ability to meet employment targets in the decree or sustain them over time. The decree remains in effect until Jan 1, 2024.

Other filings submitted this week say the state developmental disabilities agency delays services until young people reach the age of 21 – or later – in violation of state law.

One of the statements also says there is a dearth of job development services available to individuals with disabilities, because the state does not fund these supports. Instead, the state expects service providers to shift money from other funding categories to pay for job development.

In a joint motion filed March 1, Moseley and lawyers for both the state and the U.S. Department of Justice identified three issues that could stand in the way of full compliance: a lack funding, too few placements in community-based employment and other integrated activities, and insufficient leadership necessary to fulfill the requirements of the consent decree.

A month later, the state’s report says it has:  

•   Put the necessary interdepartmental leadership in place, at an annual cost of $591,244.

•   Exceeded current targets for supported employment.

•  Has remained “fully committed to providing sufficient funding to effectuate the goals and targets in the consent decree.” The report cites millions of dollars spent since 2014 and proposed by Governor Raimondo in budgets submitted for General Assembly approval for the remainder of this fiscal year and for the next year.

The state identified more than 3,000 adults in segregated programs and secondary-school special education students who are currently covered by the decree.

In terms of employment goals, the decree requires relatively modest targets, starting with perhaps 150 new jobs a year, depending on how many of the job seekers are eligible high school students in a particular graduating class.

At its heart, the agreement requires the state to fundamentally transform its approach to daytime services for adults with developmental disabilities, and to show exactly where it is putting its money. Most of the population affected by the consent decree has worked in sheltered workshops or stayed in segregated day programs in violation of the 1999 Olmstead decision of the U.S. Supreme Court, which affirmed the right of people with disabilities live and work in their communities under Title II of the ADA.  

Among the key budget items the state cited in its April 1 report is a proposed $5 million increase for the wages of private agency staff during the next fiscal year; it would hike workers’ pay by about 45 cents an hour.

The “Enhanced Payments Direct Care Staff” would provide financial incentives to providers who commit to achieve targets for placing people with developmental disabilities in jobs according to timelines that satisfy the consent decree, according to the state’s report. 

The labor force working directly with people who have intellectual challenges makes an average of about $11.55 an hour, according to a spokeswoman for the Community Provider Network of Rhode Island, which represents 23 private agencies that provide most of the services in Rhode Island.

Agencies operate at a loss for each worker they employ, because the state does not reimburse them for the full cost of employer-related taxes and other benefits, according to the spokeswoman, Donna Martin, who was interviewed about Governor Gina Raimondo’s budget proposal in February.  The $5 million proposal does not contain a provision for employer-related costs.

DD System Under Financial Strain

BHDDH director Maria Montanaro, meanwhile, has acknowledged that past cuts in reimbursement rates have left the private provider system “fragile,” according to a Providence Journal report on her testimony before the House Finance Committee in early January. 

Providers report that the cuts have forced them to reduce wages, resulting in lower quality applicants and high turnover.

In a court order spelling out the parameters for the April 1 report, McConnell asked for evidence that the state is implementing performance-based contracts for community services, in conjunction with a “flexible reimbursement model” that includes incentives to service providers for placing clients in jobs. 

The state’s report does not mention a flexible reimbursement model.

The consent decree requires that the state “ensure that its reimbursement model for day activity services is sufficiently flexible to allow providers to be reimbursed for costs” directly related to supporting integrated employment, including those that are carried out “when service provider staff is not face-to-face with a client.”

The decree goes so far as to cite specific reimbursable activities, including negotiating with employers and counseling clients by telephone, which are not covered by the current system.

Currently, BHDDH reimburses private agencies for daytime services according to the amount of time each worker spends with a client. The time must be documented for each client and worker in 15-minute increments. Agencies are not reimbursed when clients are absent, for whatever reason. Unless a client has 100 percent attendance, the agency cannot collect the full amount of funding that BHDDH authorizes for each person on an annual basis.

In response to McConnell’s request for information on performance-based contracts, the state’s report says those are still in the planning stages in all agencies governed by the state’s Executive Office of Human Services, including BHDDH. The report indicated BHDDH would have performance-based contracts in place with service providers during the next fiscal year.  The consent decree says performance-based contracts were to have implemented by Jan. 1, 2015.

Consent Decree Requires its Own Budget

The 2014 agreement between the state and the Justice Department requires that the state maintain a budget that can track the amount spent on consent decree compliance that is distinct from general expenditures on behalf of adults and adolescents with developmental disabilities.

Besides the planned $5 million in wage increases, the state’s compliance report cites another $1,870,474 in enhanced services targeted for a total of 75 individuals who would move to supported employment from a sheltered workshop or a segregated day program during the next fiscal year.

McConnell had asked the state for individualized funding information and other information that “follows the person” as each of the individuals under the jurisdiction of the consent decree makes the transition from a sheltered workshop to community-based employment or integrated day services.

So that the court, the monitor, and lawyers for both sides can track specific individuals’ progress over time while protecting their privacy, McConnell said that each person should be identified by a letter code that blocks personally identifiable information.

The state did not submit any information that could be tracked on an individual level, but its report says that it has contracted with the Sherlock Center on Disabilities at Rhode Island College to reconfigure an existing “Employment and Day Supports Survey” to accomplish that goal.

Beginning in June, the Sherlock Center will conduct the survey quarterly, providing all the requested data and enabling “ongoing measurement of targets related to the consent decree at the individual level,” according to the report.

BHDDH already has a $675,000 contract with the Sherlock Center to provide technical expertise and guidance to private agencies converting from segregated programs to community-based day services in a so-called “Conversion Institute” required by the consent decree. Governor Raimondo would keep that level of funding for the Conversion Institute in her budget proposal for the next fiscal year.

The state is “working systematically” with Sherlock Center on the Conversion Institute, as well as with direct support agencies, “to entirely transform the delivery system” for supported employment and integrated day services in Rhode Island, according to the report.

The state’s report identifies a total of 3,076 individuals with intellectual or developmental disabilities under the purview of the consent decree, including 99 who left high school in the 2013-2014 and 2014-2015 academic years.

The consent decree requires integrated employment for 75 adults formerly in sheltered workshops or segregated day programs by Jan. 1, 2016, and the state ’s report counted 101 who had met that goal.

Another of the decree’s requirements is that all of the 99 students who left high school in the past two years were to have jobs by July 1, 2015, but as of April 1, the state had identified 37 in that category who have work.  

Moseley, the monitor, told the judge in his most recent report report that his conversations with private providers and with BHDDH staff indicate that the agencies are not receiving any extra support to place people in jobs and may not be able to keep up the current pace.

Other Consent Decree-Related Funding

The state’s April 1 submission enumerates other consent decree expenditures, from July 1, 2014 through the end of the next fiscal year, June 30, 2017, at the three agencies responsible for implementation: BHDDH, the Rhode Island Department of Education (RIDE) and the Office of Rehabilitation Services of the Department of Human Services (ORS.)

The categories and amounts are:

• $800,000 in each of the current and previous fiscal years for a consent decree “trust fund” to help direct service agencies with start-up costs for converting from sheltered workshop operations and segregated day programs to community-based supports.

• $244,260 to the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and its State Employment Leadership Network (SELN) for guidance and technical assistance in transforming the state’s system of services. The SELN is a partnership between the NASDDS and Institute of Community Inclusion at the University of Massachusetts Boston.

• ·A tripling of the ORS budget for services to individuals with developmental disabilities, from $884,370 in the first fiscal year of the consent decree (July 1, 2014 to June 30, 2015)  to a projected $2,603,374 in the next fiscal year.

•  More than $300,000 a year, through the next fiscal year, budgeted by RIDE for personnel and contracts to help implement the consent decree, in addition to supports provided by individual school districts to transition-aged special education students.

• A total of $591,244 for new leadership positions focused on implementation of the consent decree: a consent decree coordinator, a chief transformation specialist, an employment specialist and a program development director.

Moving to Fill Leadership Gap

The most critical of the posts is that of the consent decree coordinator, Mary Madden, whose position gives her authority to bring about cooperation among BHDDH, ORS, and RIDE in implementing the consent decree, according to the report.

As recently as December, Moseley and lawyers for the DOJ had expressed concerns that the coordinator’s position, subordinate to BHDDH director Montanaro, did not have enough clout and that leadership was foundering. 

Since then, Madden has been appointed as the coordinator on a permanent basis and reports directly to the Secretary of the Executive Office of Health and Human Services, Elizabeth Roberts, “with the full authority of the Secretary and the Governor,” according to the report.

“The Secretary of Health and Human Services, the deputy secretaries and each of the directors of the state agencies are personally involved in monitoring consent decree implementation” and are briefed regularly by Madden and by their representatives on an “Interagency Consent Decree Team,” the report said.

RI Senate Committee Gets a Taste of Complex Federal Consent Decree

Charles Moseley, independent federal Court Monitor, left, and RI. Sen. Joshua Miller, D-Cranston and Warwick, chat after Feb. 25 briefing on federal consent decree requiring community integration of people with developmental disabilities. 

By Gina Macris 

Members of a Senate committee began to grapple with the complexities of a federal court case that has the potential to require the state to allocate millions of dollars to reform its services to Rhode Islanders with disabilities.

For an hour on Feb. 25, The Health and Human Services Committee was briefed about a federal consent decree that requires the state to give those with disabilities a chance to work and do other meaningful activities in the community.

 After the briefing, committee chairman Joshua Miller, D-Cranston and Warwick, said it wasn’t clear to him whether the state agency responsible for services to adults with developmental disabilities needed to reorganize, or whether a greater overall allocation is needed to comply with the consent decree.

“At any point will the decree require minimum funding?” Miller asked Charles Moseley, the independent Court Monitor in the federal case.

 Moseley replied that “the consent decree requires minimum funding now.”

Moseley said the “minimum funding” relates to activities necessary to achieve compliance, like an official to coordinate employment services, so that more people who need supports can get “up and working” in the community.

He gave other examples, saying that the key areas are employment and other meaningful non-work activities.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, presented statistics which show a smaller percentage of people with developmental disabilities were working in the community in 2015, a year after the consent decree was signed, than were in supported employment in 2011, the year the General Assembly enacted a 13 percent budget cut in services that support them.  

The employment figure decreased from about 23 percent to about 21 percent in four years’ time, according to Antosh’ figures.

“What has increased is the number of people who are essentially doing nothing” during the day, he said.

“Roughly 40 percent are 50 or over, and most of them have very little to do,” Antosh said.

Moseley said that “if the investment is not made now, (the goals) won’t be met in ten years,” the lifespan of the consent decree.

But Moseley did not provide Miller with a dollar amount. 

In a hearing before U.S. District Court Judge John J. McConnell Jan. 26, both Moseley and the lawyer for the U.S. Justice Department, Victoria Thomas, said flatly that the current state budget does not contain enough money to fulfill the requirements of the consent decree.

And a week later, Governor Gina Raimondo made the same categorical statement in her budget message to the General Assembly.

Raimondo’s budget proposal asks for an additional $8 million in in developmental disability funding funding in the current fiscal year, bringing the budget to $237.7 million by June 30. The increase is designed to shore up the developmental disabilities division in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

In the coming fiscal year, developmental disabilities would receive slightly less, $235.2 million under the governor's plan. However, the administration is proposing a way to sharply increase spending for community-based supports that are required by the consent decree without requesting another budget hike. Instead, the increase would be funded by savings that the administration hopes to achieve through major changes to residential programs, asking 500 adults with disabilities to move voluntarily from expensive group homes into shared living arrangements with families.

Professional Workforce Key to Implementing Consent Decree in Rhode Island

By Gina Macris

Rhode Island faces a crisis in its inability to recruit and retain a high quality front-line workforce to support people with developmental disabilities. 

The problem - substandard working conditions and low pay in a poorly trained workforce plagued by high turnover - must be resolved if the state is to implement a landmark 2014 consent decree with the U.S. Department of Justice that requires dramatic changes in the way services are configured.  

That was the consensus Feb. 23 during the start of a two-day conference at Rhode Island College, where some 75 employers, researchers, state officials and family members brainstormed about how to jumpstart a new way of doing things – and getting the funding necessary to make it happen. 

Maria Montanaro, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH)  wondered aloud if her agency could shift funding in the short term to roll out a high-quality pilot program demonstrating the need for better funding of the entire system.                                                               

With perhaps a quarter of the state’s 20 private developmental disability providers participating, she said, the pilot program would offer better salaries and training to motivate staff to show ways that services can be changed to support individual needs rather fit people with developmental disabilities into existing programs.  

That change is a pivotal element in requirements of the Consent Decree that mandate individualized supports in community-based settings.    

Montanaro said a successful pilot program would yield research data that could be leveraged into advocacy for increased funding system-wide during the2017 General Assembly session.  Such a pilot program would not require legislation, she said.  

Montanaro responded to a presentation at Rhode Island College (RIC) by Amy Hewitt, a Minneapolis researcher with a national reputation in identifying effective practices for helping people with intellectual and developmental disabilities live and work in their communities. 

Hewitt, director of the Research and Training Center on Community Living at the Institute of Community Integration at the University of Minnesota, set the tone for discussing advocacy strategies that are based on research statistics gleaned in the implementation of new policies.  

She was hosted by her counterpart in Rhode Island, A. Anthony Antosh, director of RIC’s Sherlock Center on Disabilities, which is charged through the consent decree with showing the way toward greater community integration.  

Montanaro said, “We have to get the advocacy voice mobilized in Rhode Island” so that the message of the disability community gets to the legislature “in a cogent and compelling way.”  

She said she is in a position to speak to Governor Gina Raimondo, but in the executive branch, “they’re responding to the legislative temperament.”  

Governor Raimondo’s latest budget proposal, now before the legislature, asks for some additional funding for developmental disabilities. To a greater degree, however, it would shift residential supports from expensive group home care to less costly shared living arrangements in private homes and use the savings to support employment and other community-based activities.  

The state also could leverage additional Medicaid money in creative ways to provide community-based services, Montanaro said.  

Mary Madden, the state’s new interim Consent Decree Coordinator, noted that expanding the use of Medicaid money still would mean convincing the state to pay for half the new funding.  According to Medicaid rules, the federal government pays for about 50 percent of allowable services, as long as states pick up the other half.  

Hewitt, meanwhile, said legislation and litigation drive public policy, with lawmakers responding only when the the data backs up the argument for change.  

 “The happy stories are not going to get money,” she said. Policy makers don’t make decisions based on the “feel-good stuff. That’s the realist in me talking. They make decisions based on unmet need” that is supported by statistics.  

“We expect the direct service professional to be a little bit of everything,” Hewitt said, referring to the formal title of front-line worker.

The job encompasses the role of teacher, nurse, psychologist, occupational and physical therapist, counselor, nutritionist, chauffeur and personal trainer all at once, she said. 

Yet direct service professionals are paid an average of a little less than $11 an hour in Rhode Island, she said. 

“You have to figure out a way” of changing perceptions so that “these people are not thought of as workers but professionals,” she said.  

The workforce problem in the field of developmental disabilities runs nationwide, Hewitt said.  

“No state has solved this problem, but there are few states further along the path,” she said.  

Hewitt offered a myriad of statistics that link training, supportive supervision, and decent pay to a stable, high-quality workforce that makes a difference in the lives of people with developmental disabilities.  

She is to return Feb. 24 to serve as a resource as the group of about 75 works on specific strategies for stabilizing and improving the system in Rhode Island.  

The conference participants are mostly senior officials of the private agencies that provide services to almost all the 3600 people with developmental disabilities in Rhode Island.  No front-line staff attended.  

Pam Goes, the mother of an adult with developmental disabilities, said families need to be included in policy-making and advocacy statewide.  

“Right now families feel isolated and apart,” said Goes, who is also a former family support director at the Trudeau Center in Warwick.