DOJ, RI Ask Judge To Settle Major Dispute Over Compliance With ADA Integration Mandate

By Gina Macris

A dispute has arisen between Rhode Island and the federal government over a key phrase in two court-approved agreements which require the state to provide people with developmental disabilities full access to jobs and community activities.

Both sides have asked U.S. District Court Chief Judge John J. McConnell, Jr. to rule soon on what it means for the state to achieve “substantial compliance” with two companion civil rights decrees signed in 2013 and 2014.

The details of the dispute focus on the first of the two agreements, which is scheduled to expire in six months – July 1,2020 – and is known as the Interim Settlement Agreement (ISA).

This agreement applies only to students and former students of the Birch Academy, a developmental disabilities program at Mount Pleasant High School in Providence which once served as a feeder for a now-defunct sheltered workshop in North Providence called Training Through Placement (TTP).

The ISA sought to resolve a finding by the U.S. Department of Justice (DOJ) that large-scale segregation of developmentally disabled youth and adults at Birch and TTP violated the Integration Mandate of the Americans with Disabilities Act (ADA). The matter became the nation’s first “sheltered workshop” settlement.

How McConnell decides to define “substantial compliance” in the context of the ISA will also impact the broader 2014 consent decree, intended to protect all Rhode Island youth and adults with developmental disabilities from a lifetime of day care or low-paying piecework.

In the ISA, both the state and the city of Providence were defendants until late September, when McConnell ended federal oversight of the city. He received glowing reports of a transformed Birch Academy, which today sends students to productive internships that broaden their experiences and sometimes result in regular jobs.

But the state still has detailed obligations under provisions of the 2013 agreement to help former Birch students and former TTP workers find jobs.

On Dec. 23, the DOJ notified McConnell that “it disputes that the state will be in substantial compliance with the Agreement” by July 1 “without a course-correcting change in the State’s approach to compliance.”

The DOJ asked the judge to direct the interim court monitor, A. Anthony Antosh, to “begin working with the State immediately to develop and implement a plan for completing the (2013) Agreement’s highly achievable remaining outcomes and schedule a status conference with the Parties in January 2020 to address next steps.”

A week later, on Dec. 30, lawyers for the state challenged the DOJ, saying the federal government has not documented its specific objections or offered a “clear working definition” of substantial compliance for either the 2013 or 2014 agreements.

The state is already working with Antosh on a definition of substantial compliance, its lawyers said. The lawyers, Marc DeSisto and Kathleen A. Hilton, asked for a formal hearing in January on the issue of substantial compliance, rather than the informal status conference requested by the DOJ.

DeSisto and Hilton said they would be prepared to submit evidence and sworn testimony that the state is meeting its responsibilities under the terms of the ISA.

The agreement itself says only that “substantial compliance is achieved when the state and the city have implemented all of the provisions of the Interim Settlement Agreement for all individuals in the target populations.”

DeSisto and Hilton wrote that “in this context, ‘implement’ means that there are mechanisms and/or policies put into effect of sufficient means to carry out its (the state’s) requirements of the particular benchmark at issue.”

For example, there remain 15 individuals protected by the ISA who have employment goals but have never been employed in the community, DeSisto and Hilton said. The reasons include poor health or challenging behavior, family resistance, legal or forensic issues with the individuals, or extended absences from service programs.

(The state’s memorandum did not specify the total number of persons counted in the ISA, but past reports from the state and the independent court monitor put the total at a maximum of about 125, with fluctuations over time.)

The state could have requested “variances” to exempt these 15 individuals from employment and remove them from the ISA caseload, the lawyers said, but officials have no interest in pursuing this route.

Instead, the state wants to meet the individuals’ needs, “where they are at this time, and (work) on an individualized basis, towards the ultimate goal of employment,” DeSisto and Hilton wrote. They said the state has ”competence” to meet the employment goals, whether or not those goals are actually reached, suggesting that this “competence” demonstrates substantial compliance.

DeSisto and Hilton asserted that the state has achieved full compliance in 52 provisions of the ISA and substantial compliance in the remaining three provisions. But their memorandum to the judge does not describe those respective provisions.

The memo also referred to findings of the previous court monitor, Charles Moseley, who in August assessed the city’s compliance with the agreement but left the state’s compliance with numerous provisions “to be determined.”

DeSisto and Hilton indicated that Moseley followed up on his findings regarding state compliance in an Oct. 1 email with a new report attached. The lawyers included what appears to be an index of Moseley’s findings in three categories; substantial compliance, noncompliance, and “to be determined”, but they did not include the Oct. 1 report itself. Nor does that report appear separately in the court file.

DOJ And RI Can't Agree On Next Consent Decree Monitor; Judge McConnell To Decide

By Gina Macris

For more than four months, the U.S. Department of Justice (DOJ) and the state of Rhode Island have been unable to agree on a new monitor of the state’s compliance with a 2014 civil rights consent decree affecting adults with developmental disabilities.

The stalemate now leaves the choice to U.S. District Court Judge John J. McConnell, Jr., who will consider apparent differences between the DOJ and the state over the extent of the monitor’s authority in making his selection. McConnell must choose from up to six candidates – a maximum of three names submitted by each side.

In the absence of a monitor, whose duties include mediation of disputes, a disagreement simmered between the state’s consent decree coordinator and an Employment First Task Force. The argument, concerning the the independence of the task force, escalated to the point of prompting a letter from the DOJ to the state’s lawyers.

The monitor’s job became vacant with the retirement of Charles Moseley, who notified all concerned on July 9 that because of health concerns, he would step down effective Sept. 30.

The state and the DOJ had 30-days to agree on a replacement once Moseley gave his notice, according to the consent decree. After 30 days, the decree says, the judge makes the selection from the candidates submitted by the two sides.

McConnell initially set a deadline of Sept. 30 for the two sides to conclude discussions, but at the end of September, he extended the deadline to Nov. 25, requiring the DOJ and the state to check in with him every two weeks on the progress in talks.

Earlier this month, he asked the two sides to submit statements on their respective views of the role of the consent decree monitor. That deadline also was extended, from Nov. 19 to Nov. 22.

The statements appear similar in many details but suggest that the DOJ envisions greater independence for the monitor than does the state. The DOJ has asked for a phone conference with the state and the judge on the matter of the monitor’s selection.

During the time there’s been no monitor, comparatively small differences between the state’s consent decree coordinator and an Employment First Task Force (EFTF) have coalesced into a dispute over the independence of the Task Force that reached the ears of the DOJ in at least one telephone call.

The EFTF was created by the consent decree to serve as a community-based advisory group to the state, the monitor, and the court. Its members are drawn from many non-profit organizations working to improve the quality of life of adults with developmental disabilities, as well as representation from those receiving services and their families. .

The flap appears to finally have been settled with a Nov. 13 letter from the DOJ to the private lawyers representing the state in the consent decree, Marc DeSisto and Kathleen Hilton.

The letter said EFTF members informed the DOJ that the state’s consent decree coordinator, Brian Gosselin, has told the task force not to communicate with the DOJ without Rhode Island’s oversight.

Gosselin, queried briefly by Developmental Disability News after an EFTF meeting Nov. 19, which he attended with Kathleen Hilton, one of the state’s consent decree lawyers, said it was a “genuine misunderstanding.”

The DOJ said in its letter that it hoped it indeed was a misunderstanding that was at the heart of the disagreement:

“We hope that there is simply a misunderstanding or miscommunication here, as such an instruction would be inconsistent with the role of the Task Force as set out in the Consent Decree,” wrote DOJ. While the consent decree required the state to create the task force,” the letter said, the consent decree ”does not contemplate that the State will supervise its work, dictate its findings, or limit its communications. The Task Force’s members are independent stakeholders whose role is to assist in successful implementation of the Consent Decree, including by providing recommendations to the Monitor and State officials.”

“Indeed, any limitation on open communication would undermine the intended autonomy of the Task Force. We ask Rhode Island to help ensure that the channels of communication between the Employment First Task Force, the United States, and the Monitor are uninhibited,” the letter said. It was signed by trial attorneys Jillian Lenson, Victoria Thomas and Nicole Kovite Zeitler.

The letter was not discussed at the most recent EFTF meeting, but there appeared to be some tension between Gosselin and members of the task force around a discussion that began with EFTF questions about the details of the state’s latest quarterly compliance report and ended with the state’s own questions about ways the task force could do more to work in the field to present the benefits of employment.

Members of the task force indicated they do what they can in the community, but added that they are a group of volunteers, most of them with full time jobs. (Some of them are also family members with responsibilities for individuals with special needs.) Task force members emphasized the advisory nature of the committee, echoing the DOJ letter.

If a monitor were in place, he or she might be expected to mediate differences between the consent decree coordinator and the EFTF before they got the point of requiring a lawyer’s letter from one side to the other. In fact, the consent decree explicitly authorizes the monitor to mediate, although the monitor’s recommendations for settling disputes are not binding, unless they happen to overlap with requirements of the consent decree, according to the DOJ.

As to the monitor’s powers, one of the main points made by the DOJ is its view that the monitor is not bound by the preferences of the state or the DOJ, unless the preferences are also required by the consent decree itself. By the same token, the state is not bound by the DOJ’s preferences and vice-versa, according DOJ view.

The state does not spell out that distinction between either sides’s preferences s the requirements of the consent decree. The differences between the DOJ and the state are highlighted in red or blue type in a in an extra document submitted to McConnell by the federal government.

In the highlighted document, the two sides differ on the monitor’s independence in evaluating situations in which there is a change in the relevant facts, like fluctuating numbers of people in the consent decree “target populations”, or subgroups, who are required to be placed in jobs in the community. (There are four “target populations,” depending on whether or not individuals ever were employees of a sheltered workshop or whether they were in high school or young adults at the time the consent decree was signed.)

If, for example, the number of target population members is lower than the number of target population members required to be placed in integrated employment, the state says that monitor will make recommendations or ask advice from the court on how to evaluate the state’s compliance in light of the changed numbers.

The DOJ, however, just asks that the monitor report the changed numbers to the court.. Its preferences would not put any qualifiers on the monitor’s authority to evaluate the new situation.

There is agreement that the annual budget for the court monitor, including expenses any consultants that may be hired, should not exceed $300,000, as required by the consent decree. The state pays the monitor.

But the DOJ points out that the consent decree allows the monitor to ask for increase that would exceed the $300,000 limit. The state’s document omits that point. Any expenditure over $300,000 would require approval by the state, according to the consent decree.

In many respects, the submissions by the state and the DOJ are identical.

Read the state’s view of the monitor’s role by clicking here.

Read the DOJ’s view of the monitor’s role by clicking here.

Read the DOJ comparison of the two documents by clicking here.

Views Differ On Role of State Coordinator In RI Olmstead Consent Decree Case

By Gina Macris

The Rhode Island General Assembly’s leading advocate for individuals with developmental disabilities says there’s an inherent conflict in a state employee also serving as state coordinator of the multi-agency efforts to comply with a 2014 civil rights consent decree.

“If you’re working for the state, I don’t know how you work for the 4,000 people” the consent decree seeks to protect, said state Sen. Louis DiPalma, D-Middletown, who also chairs a special legislative commission studying Project Sustainability, the state’s fee-for-service reimbursement system for private providers of developmental disability services.

But the principal lawyer for the state in the consent decree case says that legally, it’s immaterial whether the consent decree coordinator is a state employee or an independent contractor. For many reasons, a state employee is the best choice at this stage of compliance, Marc DeSisto, the lawyer, said in a statement.

From 2016 until earlier this year, the consent decree coordinator, a position required by the agreement, was an independent contractor. The most recent contractor, Tina Spears, left the post in April. She was succeeded by Brian Gosselin, the Chief Strategy Officer for the Executive Office of Human Services (EOHHS.) Gosselin also continues to do his salaried job.

“The consent decree coordinator is a critical role in ensuring compliance with the consent decree and court orders. The responsibility includes coordinating across all state agencies,” DiPalma said in a recent telephone interview. “I don’t know how that’s done on a part time basis” by someone who also has another job.

Since the post was established in 2015 there have been five consent decree coordinators, including Gosselin, who has served as the interim coordinator twice.

In a statement, DeSisto said “the state as a whole is responsible for compliance, not a single coordinator.”

There is no legal impediment to a state employee serving as the coordinator, nor is there a requirement concerning the number of hours a week the coordinator must spend to fulfill those duties, DiSisto said.

“Over time and in recognition of the progress and evolving dynamics concerning compliance, we have refined the role of the coordinator to drive and coordinate the state’s ongoing compliance efforts,” he said.

An EOHHS spokesman said Gosselin was appointed because of his familiarity with the consent decree and because he would bring stability to the leadership of compliance efforts as the consent decree enters the second half of its 10-year span.

“The state cannot afford to have further turnover in the coordinator role,” David Levesque, the EOHHS spokesman said in an email, “especially during a time while there is going to be (a) Court Monitor transition.” Charles Moseley, the original monitor, has retired, and a new one has not yet been selected.

“A state employee is more likely to remain in this position than an independent contractor,” DeSisto said.

DiPalma agrees that “it’s critical that we have stability in that (coordinator’s) position, but no rationale has been given for why we have had five coordinators in the last five years. Without that information, I don’t know that the coordinator we have now is going to last any longer,” he said. He said his comments did not reflect any judgment of Gosselin.

Levesque, the EOHHS spokesman, said, “EOHHS is fortunate to be able to tap someone of Brian’s skill set and experience, particularly his intimate knowledge of the consent decree process in Rhode Island.”

He and DeSisto each said that the U.S. Department of Justice and Moseley, then the monitor, agreed to Gosselin’s appointment.

Gosselin will continue to be paid $117,482 a year as chief strategy officer, Levesque said, and has a team of staffers to support him in that role.

The independent contractors in the job, Mary Madden, Dianne Curran, and Spears, each made $100,000 a year.

Madden’s and Curran’s contracts said they each had the “full authority” of the Governor and the Secretary of EOHHS to oversee and coordinate compliance efforts in all state agencies

Beginning in December, 2018, changes in Spears’ job description and her contract suggest that her role might have become more circumscribed.

In December, the job description was amended to require the coordinator to make “weekly written reports to management team and EOHHS leadership team detailing coordination progress, achievements, challenges and upcoming milestones.”

Two other changes in the job description called for the coordinator to use a “mutually agreed upon escalation protocol to swiftly address issues of concern” and to use a “state approved communications and engagement plan when representing the state at public events and with stakeholders.”

The coordinator was to have a “designated team member” in each of the three primary agencies responsible for consent decree compliance as a point of contact for responding to “issues and concerns.” And the coordinator was required to include a “management team member” on all email communications related to the three respective agencies. The three agencies are the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals; the Office of Rehabilitation Services (part of the Department of Human Services) and the Rhode Island Department of Education.

At the end of Spears’ one-year contract in January, 2019, it was amended to include the revised job description and extended six months, to June 30, 2019.

Spears, who is now executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association of private service providers, offered her perspective on how the job description changed.

Spears, interviewed in August, said the consent decree coordinator has a unique role in coordinating activities among three separate state agencies to advance compliance with the consent decree, and there is a “natural tug-and-pull kind of dynamic” that can run in several directions.

“There were times when that (tug and pull) became challenging. I’m also the kind of person who’s pretty direct about what I expect and when it becomes challenging I usually address it. So we worked on agreement on how to develop a communications strategy” and a protocol to follow when there was disagreement, she said.

The job at the CPNRI became open when the former director, Donna Martin, announced her departure effective March 1. Spears said the new job was an opportunity to be a leader in systems change “in a way that really elevates our mission, elevates our voice, and elevates our practices.”

Spears, who has parented a child with extensive disabilities and medical issues, has worked at the Rhode Island Parent Information Network as a peer family mentor and government lobbyist. She also has worked as an analyst in the Senate Fiscal Office, where she said she learned about the consent decree and found her calling at the policy level. She left the Senate job to become consent decree coordinator in January, 2018.

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.

Judge Closes Nation's First "Sheltered Workshop" Case Early, Citing Great Strides in Providence

Etta Carmadello, Special Education Director for Providence Schools, is interviewed outside U.S. District Court Sept. 26. Onlookers, left to right, are Christopher Coleman, principal at Mount Pleasant High School; Lisa Vargas-Sinapi, Carmadello’s predecessor in the director’s post; Linda Butera Noble, former Director of Community Services at the Birch Academy at Mount Pleasant High School; and Mary Ann Carroll, the lawyer representing the city of Providence. Carroll credited Vargas-Sinapi, Noble and Carmadello in providing critical leadership that ultimately brought a landmark civil rights case against the city to a close. All photos by Anne Peters.

By Gina Macris

The U. S. District Court in Rhode Island has approved an early conclusion to the nation’s first “sheltered workshop” civil rights complaint, brought six years ago against the city of Providence, with federal officials praising the swift, comprehensive, and lasting efforts at Mount Pleasant High School to transform the lives of its students with intellectual and developmental disabilities.

“The hard, tedious work you did has really had a positive effect on people’s lives,” said Judge John J. McConnell, Jr. in a hearing Sept. 26, addressing a packed gallery in a small courtroom filled with state, city, and school officials involved with developmental disability services.

When the U.S. Department of Justice first investigated in 2013, lawyers found the Birch Academy in an isolated classroom in the basement of Mount Pleasant High, where students “collated jewelry” in a sheltered workshop setting that served as a “pipeline” for a lifetime of such work, said DOJ lawyer Victoria Thomas.

The 2013 civil rights agreement in Providence, based on the Olmstead decision of the U.S. Supreme Court, was the first in the nation to address the rights of individuals with developmental disabilities to live, work, and play in their communities under the Integration Mandate of the Americans With Disabilities Act (ADA).

Today, students attend classes integrated with their typical peers. They receive services designed to help them identify and develop their own interests and skills and to try them out in two 60-day work experiences before they graduate, Thomas said. She said those internships are “life-changing” for some people. For example, Miriam Hospital has offered permanent jobs to several Birch graduates.

Mary Ann Carroll, a lawyer representing the city, said that at the outset, former schools superintendent Susan F. Lusi took swift action in empowering the redesign of the Birch program in the summer of 2013, a job that has involved changing the mindset of staff and “parents who thought that a sheltered workshop was appropriate for their children.”

Judge McConnell, in dismissing the case nine months ahead of schedule, said he imagined that resistance was similar to what he encountered decades ago as a lawyer for activists seeking to close the Ladd School, the state’s now-defunct institution for people with developmental disabilities.

“Change is hard when it has to do with human beings – how they perceive themselves and how others perceive them,” he said.

He said he tells own children that he wants them to be “problem-solvers and not problem identifiers.”

“It’s good to see public servants be problem-solvers,” McConnell said.

McConnell asked if either the DOJ or an independent court monitor had any concerns about maintaining the changes at Mount Pleasant in light of the takeover the Providence school system by the state Department of Education.

The “thought of stalling or going backward is unacceptable,” the judge said.

The monitor, Charles Moseley, said he has not spoken to state education officials about the takeover.

But Thomas, the DOJ lawyer, said she had read the outside report which prompted the state to move ahead with the takeover and found “no overlap” between the faults it found in the district as a whole and the compliance efforts at Mount Pleasant High.

Charles Moseley, Left, and Judge John J. McConnell, Jr., in the Judge’s Chambers After Court Sept. 26

Carroll, the city’s lawyer, said the changes have been made in such a way that she does not feel they will “evaporate.” Emphasizing the teamwork of key leaders in the school department and the support of current and former mayors, she said she hopes the successes at Birch can serve as a model for other cities and school departments around the country.

“The message I want people to take away is that when we work together, we can make things happen,” Carroll said.

Moseley himself is leaving the monitor’s post, but his successor will continue to keep tabs on Mount Pleasant as part of another case which grew out of the initial “Interim Settlement Agreement“ of 2013.

At least three departments of state government still have obligations under a broader, statewide consent decree signed in 2014 to bring integration into services for all Rhode Island public high school students with developmental disabilities. Once they become adults, the state must help them find regular jobs and engage in community activities. The statewide consent decree remains in effect until 2024. The Interim Settlement Agreement was to have expired July 1, 2020.

A spokeswoman for the state Department of Education affirmed its commitment to continuing the reforms at Mount Pleasant in keeping with the 2013 interim agreement and the subsequent statewide consent decree, in response to a recent question from Developmental Disability News.

The Providence school department “will be expected to continue to meet the decree requirements, and our agency will continue to provide support and technical assistance to the entire state to ensure that our school communities are meeting the Employment First policy,” said spokeswoman Meg Geoghegan.

The Employment First Policy, which has been adopted statewide, assumes that all adults with disabilities can work in the community, in keeping with the Integration Mandate of the ADA.

The end of federal oversight at Birch, which over the years has involved between 51 and 65 students at any one time, also has marked the end of Charles Moseley’s role as the independent monitor. He announced in July that he planned to step down at the end of September, citing health concerns.

The consent decree gives the state and the DOJ 30 days after they receive a letter of resignation to reach agreement on a new monitor. If they can’t agree in that time frame, according to the consent decree, each side is to submit the names of up to three candidates to the judge, who will make the decision.

In response to recent questions from Developmental Disability News, a spokesman for the state Executive Office of Health and Human Services said: “DOJ and the state continue to work collaboratively on the selection process for a replacement monitor and have kept the Court aware of their work in this important decision.”

DOJ Urges End To City’s Obligations In Landmark Providence "Sheltered Workshop" Case

By Gina Macris

The U.S. District Court will hear a request by the City of Providence and the U.S. Department of Justice for early termination of a civil rights agreement affecting intellectually challenged students at Mount Pleasant High School who were once trained only to perform repetitive tasks in a sheltered workshop.

The hearing was scheduled for Sept. 26 after the DOJ formally signaled its support for the city’s request, saying the city and its school department have transformed services for students in keeping with the Integration Mandate of the Americans With Disabilities Act.

“Students are now integrated with their classmates and receive services to prepare them for integrated work in careers that match their interests and abilities,” said lawyers for the DOJ.

In accordance with the agreement, “the City will ensure that these changes are lasting,” the DOJ said in written arguments urging Judge John J. McConnell, Jr. to dismiss the case against the city.

The DOJ praised the city’s “rapid implementation” and “consistent adherence” to the provisions of the agreement, saying it has resulted in “substantial compliance” a year ahead of schedule. The government’s conclusion concurs with a recent report filed by an independent court monitor.

“This is a victory for all involved,” the DOJ said.

The DOJ lawyers pointed out that “this agreement was the first in the nation to address the rights of individuals with disabilities to receive integrated employment services instead of segregated workshop services.”

The DOJ did not address the city’s compliance in the context of the impending state takeover of the city’s school system. The request for early dismissal was made last winter - months before the appointment of a new state Commissioner of Education, who received a devastating outside evaluation of the school system from the Johns Hopkins Institute for Educational Policy.

The agreement, signed in 2013, is due to expire on July 1, 2020. It served as a prototype for a subsequent statewide consent decree signed in 2014 which obliges the state to provide transition services to students with developmental disabilities in all high schools across Rhode Island and to transform all work and non-work adult services to comply with the ADA’s Integration mandate, which has been affirmed by the Olmstead decision of the U.S. Supreme Court.

An early dismissal of the city’s obligations under the 2013 Interim Settlement Agreement (ISA) would mean that the city would no longer have to prepare for frequent calls and periodic visits from the monitor and the DOJ lawyers, or to file detailed and time-consuming quarterly reports documenting its compliance efforts. But court retains jurisdiction for a year after the expiration date, according to the DOJ.

Granting the city’s request would not affect the state’s continuing obligations for former Birch students who were sent to the now-defunct sheltered workshop, Training Through Placement, which used the Birch Academy as a pipeline for workers. Nor would it curtail the state’s responsibilities for other adults with developmental disabilities throughout Rhode Island who must have access to integrated work and non-work services under provisions of the separate 2014 consent decree.

The two agreements have fostered an “Employment First” policy, which assumes that all adults with developmental disabilities can work at regular jobs in the community. The policy encompasses self-employment and customized employment, which involves cooperation by employers motivated to re-order established job descriptions to get important tasks done by reliable employees. (Exceptions to the “Employment First” policy are allowed on a case by case basis.)

The DOJ said an independent court monitor, Charles Moseley, has found in a recent report that the city has met or exceeded standards for 45 compliance measures in four categories:

• Career development and transition planning

• Trial work experiences

• Training, outreach, and education about integrated employment for school staff, students and families

• Interagency coordination

School personnel have prepared students to obtain competitive employment as adults through “person-centered” planning, which begins by highlighting each student’s individuality; as well as detailed career development plans and vocational assessments, the DOJ wrote.

Moreover, the city’s efforts have extended to former Birch students who left school as early as 2010. The city has undertaken “significant efforts” to locate them and provide vocational assessments, supported employment services and other assistance to help them find integrated employment. The city has reached nearly 50 former students.

“As noted by the court monitor, this ‘look back’ strategy to correct past discrimination showcased the city’s commitment to the objectives of the ISA,” according to the DOJ.

The government lawyers also agreed that the city provides high quality trial work experiences that are individualized and integrated in the community. The agreement requires that every student have two such internships, each one lasting 60 days, before leaving school.

The city “repeatedly went the extra mile to ensure students’ individualized needs were met” and has satisfied the monitor’s concerns about the few cases in which students lacked a second internship, the DOJ said.

Teachers and other professionals working with students participate in frequent training and have “consistently demonstrated their ability to implement the requirements and goals of the ISA, breathing life into the city’s Employment First Policy,” the DOJ said.

The lawyers cited improvements in the school department’s cooperation with state agencies, including regular consultation with a rehabilitation counselor from the Office of Rehabilitation Services and monthly meetings between the city’s special education director and state officials to review the progress of former students who are receiving adult services.

The city’s swift progress in implementing the agreement and “years of sustained reform” have resulted in a myriad of changes in policy, operations, and attitudes that will be “difficult to dismantle,” the DOJ wrote.

And the success of the ISA, “including considerable outreach and education to students, families, and the community, has spread awareness and the expectation that students with IDD are capable of working in integrated settings with services,” the lawyers wrote.

The DOJ noted that Birch students will continue to benefit from the state’s obligations under the 2014 statewide consent decree, which requires students with developmental disabilities in all Rhode Island high schools to receive transition services similar to those developed through the ISA. The statewide decree is to expire in 2024.

The Sept. 26 hearing before Judge McConnell is scheduled for 10 a.m.

Read the next article (below) for monitor Charles Moseley’s assessment of the city’s compliance efforts under the Interim Settlement Agreement.

In addition, click here for an article on a public discussion of the pros and cons of early termination of the city’s obligations.

Monitor Finds Providence School In "Substantial Compliance" With DD Civil Rights Agreement

By Gina Macris

Educators at Mount Pleasant High School have done a good job integrating special education students with their peers and preparing them for the world of work as adults.

That’s the overall conclusion of a federal court monitor who says the Providence School Department is in “substantial compliance” with a 2013 civil rights agreement which ordered an end to unnecessary segregation of students with intellectual and developmental disabilities, mandating instead an inclusive approach that prepares them to live and work in the community as adults.

The 2013 agreement followed a federal investigation which found that the Birch Academy, a special education program operating within a city high school, was in violation of the Americans With Disabilities Act.

The monitor’s report comes as the state prepares to take control of Providence schools in light of an explosive report by a visiting team from the Johns Hopkins Institute for Education Policy, which found dramatic deficiencies in teaching, learning, achievement and discipline throughout the system.

However, the detailed, 80-page report by the court monitor, Charles Moseley, does not place the school department’s compliance efforts in the context of the Johns Hopkins report or the pending state takeover.

The finding of “substantial compliance” sets the stage for a federal court hearing on whether the city should be granted early relief from federal oversight of the 2013 Interim Settlement Agreement (ISA), which is due to expire July 1, 2020. Even if federal oversight is not curtailed early, the school department was still required to achieve substantial compliance by midsummer of this year to have the agreement terminated as scheduled on July 1, 2020, according to lawyers for the U.S. Department of Justice.

The school department had asked to shorten the length of the agreement months before the appointment of a new state Commissioner of Education, Angelica Infante-Greene, who sent in the Johns Hopkins educators to evaluate the entire school system.

A hearing on the city’s request for early relief is expected in early fall, according to a spokeswoman for U.S. District Court John J. McConnell, Jr., who is presiding over the case.

Moseley said his finding of substantial compliance referred only to the city, and not the state, which is also a defendant in the 2013 case because it licensed a sheltered workshop for adults with developmental disabilities where most Birch students ended up once they left school.

In 2014, after a broader investigation, the DOJ extended the finding of unnecessary segregation to all the state’s sheltered workshops and day care centers for adults with developmental disabilities. The state and the DOJ subsequently signed a separate consent decree mandating a transformation of all Rhode Island’s daytime services for adults with developmental disabilities to an inclusive model over ten years.

Students who leave Birch will continue to receive protections under the provisions of the 2014 consent decree.

‘Culture Of Low Expectations’

Moseley’s report recounted the investigation of the DOJ, which found a “culture of low expectations” at Birch, where students performed menial tasks in a sheltered workshop setting inside the school, often without pay, and were redirected to the work in front of them when they indicated an interest in finding work in the community.

Some students sorted buttons by color into bags or buckets that were emptied by staff at night to be re-sorted the following day, according to the findings.

When students with intellectual and developmental disabilities aged out of the school system, they were sent to a nearby sheltered workshop in North Providence. DOJ found that Birch “served as a direct pipeline” to that workshop, called Training Through Placement. Former Birch students often remained there for decades, even when they asked for a change.

Even before the ISA was signed in June, 2013, Providence closed the sheltered workshop at Birch and replaced the principal, putting the program under the supervision of the special education director. The school department set about redesigning the curriculum with the goal of helping students build skills and confidence to realize individualized post-secondary goals as members of the community at large.

Since 2013, the enrollment at Birch has varied at any given time from 51 to 65 students, according to Moseley’s data.

Moseley praised the redesigned Birch program for its “robust, engaging curriculum;” its efforts to integrate students facing intellectual challenges with their peers throughout the school day, and for providing experiences and activities designed to prepare young people to plan for jobs and otherwise lead regular lives once they finished high school.

In stark contrast, the Johns Hopkins team found a shortage of special education teachers in the system as a whole, with some of them admitting they hadn’t been able to meet their students’ individualized educational goals in years.

Though Mount Pleasant High School was one of the 12 schools visited by the Johns Hopkins observers, their final report does not indicate whether they were briefed on the ISA involving Birch Academy students.

Systemic Improvements Cited

Moseley’s assessment cited improvements in staffing, professional development and leadership, as well as collaboration with the Rhode Island Department of Education and state agencies serving adults with developmental disabilities, particularly in connection with the development of transitional and supported employment services.

One highlight of this type of collaboration has been the creation of Project Search, a work internship program at the Miriam Hospital for students aged 18 to 21. Under this program, the hospital has hired some former Birch students as permanent employees.

Other endeavors offering real-world experiences, including practice in independent living, job discovery and employment –related skills, are the Providence Transition Academy and the Providence Autism School to Tomorrow Academy, Moseley said.

Some Difficulty In Compliance Noted

Moseley noted that the school district has had difficulty meeting two requirements:

• Matching each Birch student with two internships before graduation, each one lasting at least 60 days

• · Linking students and their families with representatives of adult service agencies, the Office of Rehabilitation Services (ORS) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Of 11 students who were to leave school at the end of the academic year in June, nine had had two internships by the end of February and the remaining two students each had had one. Of those two, one completed a second internship in June. The family of the remaining student, who uses a wheelchair, did not want her using public transportation to go to and from another trial work experience, Moseley reported. He said the school department should have provided the student other options for transportation.

At the end of any given academic year, Providence reported between 51 percent and 91 percent of students preparing to leave school had completed two trial work experiences, although Moseley said this requirement has been met in the “vast majority” of cases.

He said the school department is making “meaningful efforts” to overcome barriers to the internships, such as transportation, irregular school attendance by some students, specific health care needs of others, and, in some instances, parental resistance.

In introducing students and families to adult services agencies, Moseley faulted the school department for not making it clear to parents that they may ask for a representative of either ORS or BHDDH to attend annual meetings for developing the Individualized Educational Plan (IEP) for their son or daughter. The data on attendance at such meetings showed that ORS or BHDDH had a presence only when students were 19 or older, Moseley said. Transitional services are to be made available beginning at age 14, according to the federal Individuals With Disabilities Education Act.

Moseley said the state has agreed to amend the standard IEP meeting notice to give parents the option of requesting ORS or BHDDH attendance. The state has a contract with the private non-profit Rhode Island Parent Information Network to represent the adult service agencies at IEP meetings of students 14 through 17, Moseley noted.

Mosley said that since 2013, the changes made by the city and its school department “have shifted the focus of education and training toward the accomplishments of key benchmarks and provisions of the ISA.”

Assurances of funding and other important changes have grown out of a collaborative approach involving ORS, BHDDH and others that have resulted in memoranda of understandings “with the intention of producing enduring policy change,” Moseley wrote.

He said his reviews over the past few years “have documented the ability of PPSD (the Providence School Department) to maintain compliance with both the letter and intent of the ISA and strongly suggest that such changes will be maintained as ‘business as usual’ beyond the term of this agreement.”

Federal Monitor Finds “Mixed Results” in RI DD Employment; Urges Expansion Of Efforts

By Gina Macris

A federal court monitor says the state of Rhode Island has had “mixed results” in its efforts to find competitive employment for adults with developmental disabilities as required by a 2014 civil rights decree mandating the state correct violations of the Americans With Disabilities Act.

The monitor, Charles Moseley, has urged the state to take “immediate and tangible steps” to develop the capacity of both state agencies and private service providers “to sustain the high level of training and supported employment activity required by the Consent Decree both now and into the future. “

The state licenses about three dozen private agencies, most of them non-profits, to provide the direct services for adults with developmental disabilities that the state relies on to meet the goals of the consent decree, both for supported employment and non-work activities in the community.

The state has met employment goals for January 1, 2019 in two of three categories of adults with developmental disabilities, those who previously worked in sheltered workshops and those who historically were served in segregated day centers. But the pace of placements has slowed at a time when the requirements of the consent decree are set to accelerate, from 2020 to 2024, according to figures presented by Moseley.

In the first three months of 2019, a total of 18 adults with developmental disabilities landed jobs. That is the second-lowest quarterly total on record for the first five years of the consent decree. The lowest quarterly job placement rate occurred from July through September, 2018, when only 7 individuals got jobs.

Moseley’s report zeroed in on a third category in the consent decree, young adults recently out of high school. The state has never met target numbers for job placements for that group. As of March 31, the number of young adults with part-time jobs stood at 257, or about 62 percent of a population of 412 persons in their twenties.

Moseley said that the state’s performance-based supported employment program, launched in 2017, “did not significantly impact placement numbers” for young adults.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) recently issued a request for proposals for a new iteration of the individualized supported employment program that appears to be tailored to young adults, in that that it seeks clients who have never held jobs.

“We continue to see PCSEPP (The Person-Centered Supported Employment Performance Program) as one of the strategies to increasing employment outcomes,” a BHDDH spokesman said in a statement July 29. “It has provided the state with two years of data-informed outcomes and continues to be responsive to providers’ requests for innovative and flexible resources to promote employment outcomes,” the statement said.

BHDDH set an Aug. 30 deadline for the submission of proposals from private providers, but those agencies have asked for an extension.

At a meeting July 12, representatives of private providers asked for at least three months to plan their programs, because of a requirement that the services reflect a formal collaboration between two or more agencies. The agencies need time to consider structural changes to their operations that may be required by the collaboration, their representatives said.

BHDDH has extended the application deadline to Oct. 4, according to a memo to providers dated July 19.

In his report, Moseley noted that the “state is taking important steps to rebuild the developmental disabilities service delivery system under the Consent Decree.”

He cited efforts by the Division of Developmental Disabilities and the Office of Rehabilitation Services to “establish important links” with providers, families, advocacy organizations and the state Department of Labor and Training to “achieve and sustain supported employment outcomes” among those facing intellectual or developmental challenges. BHDDH is also working with the special legislative commission studying the state’s fee-for-service reimbursement rate, Moseley said. He noted that there has been additional progress in the training of providers’ staff, quality improvement measures and other key areas.

But in a recent conference call with the Employment First Task Force, a community advisory group on implementation of the consent decree, he echoed the conclusion of his most recent quarterly report.

When members of the group thanked Moseley for his work -– he is stepping down as monitor Sept. 30 — and asked him for advice on their recently-completed strategic plan, Moseley said they should focus on one in the plan that concerns providers’ capacity to do their jobs.

Moseley said he has heard “a lot” about adults with developmental disabilities being unable to access any suitable services from a provider and instead choosing to “self-direct.” That means consumers and families design their own programs and hire and supervise staff. The phenomenon has sometimes been called “self-directed by default.”

This is one area that would benefit from a workgroup including providers and state officials to try to “capture” the problem, which can be difficult to document when one family applies to multiple agencies, he said.

Read Moseley’s report here.

(This article has been updated.)

Feds Consider Early Termination Request For DD Oversight At Mount Pleasant High School

By Gina Macris

A Providence School Department request that the federal government end its oversight of a special education program at Mount Pleasant High School is encountering some resistance and concern because of a more immediate development: The state is taking control of the entire “broken” school district.

Months ago, the city of Providence sought early termination of a landmark federal Interim Settlement Agreement, reached in 2013, in which the school department promised to make major changes in the way special education students at Mount Pleasant High School were being shuttled into a sheltered workshop program in North Providence.

The school system agreed to prepare students in the Birch Vocational Center at Mount Pleasant High School to take advantage of supported employment in the community and to participate in integrated non-work activities in compliance with the integration mandate of the Americans With Disabilities Act.

The U.S. Department of Justice and a federal court monitor are carefully considering the request and have solicited the opinions of various segments of the developmental disabilities community on the pros and cons of terminating the agreement now, a year before it is set to expire.

On July 23, the monitor, Charles Moseley, and Victoria Thomas, a lawyer for the DOJ, discussed possible early termination via conference call with members of the Employment First Task Force (EFTF), an advisory group on matters concerning the 2013 agreement and a broader, statewide consent decree signed in 2014.

On the same day, the Council on Elementary and Secondary Education voted, as anticipated, to empower the state Commissioner of Education to intervene in the Providence School District, taking temporary control, if necessary, of its budget, personnel, and governance.

Thomas said she was concerned about a recent report on Providence schools from Johns Hopkins University’s Institute on Educational Policy which found a deeply dysfunctional system where most students are not learning, principals are struggling to lead, teachers and students don’t feel safe, and some buildings are crumbling around them.

Mount Pleasant High School was one of 12 schools visited by the Johns Hopkins researchers.

At the same time, Thomas said, she personally has been “very impressed with the work Providence has done” with the Mount Pleasant special education students protected by the 2013 Interim Settlement Agreement. Over the last several years, Thomas has participated in many site visits at Mount Pleasant High, as has Moseley, who concurred with Thomas’ assessment. Having done similar visits in other states, Thomas said, she has been “blown away” by the quality of work done to put the needs and wants of students in Providence at the center of their individualized education plans.

“That doesn’t mean that everything is perfect,” Thomas said.

The Interim Settlement Agreement assumes that Mount Pleasant High School students will make a successful transition from school to adult services provided by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. And Thomas said some of the comments that have been received from stakeholders in developmental disability services indicate that the DOJ and the monitor “really need to look into adult services.”

The Providence school department’s involvement in the Interim Settlement Agreement is set to expire in July, 2020, as long as the city is in “substantial compliance” a year ahead of time and the changes made during compliance are found to be lasting.

If the DOJ and the monitor agree to “early termination and we’re wrong,” Thomas said, the oversight of the state’s efforts to integrate adults with developmental disabilities in their communities will continue as part of the overlapping statewide consent decree signed in 2014.

“We’re not leaving anyone behind,” she said. Moseley added that the monitor and the DOJ will continue to have access to data about the progress of the same students as they merge into the adult population.

State Sen. Louis DiPalma, D-Middletown, who attended the task force meeting, expressed concern that even if implementation of the Interim Settlement Agreement has been going well at Mount Pleasant High School, the state of the school system around the program is in question.

Anne Peters, a parent who serves on the task force, asked whether continuing to monitor Mt. Pleasant High might be needed to protect the resources that have been brought to bear to change the prospects for special education students.

“I think we’re expecting quite the chaotic year” in Providence, she said.

“An excellent question,” Moseley said.

Several days before the meeting, Task Force leaders collected comments on early termination that made three main points:

• There seems to have been significant progress at Mt. Pleasant, with special education students having meaningful work trials

• Students still leave school unable to get the appropriate employment supports, like those from other communities, because providers are not accepting new referrals.

• ·The Johns Hopkins report will put Providence under pressure to make many reforms and it would be ill-advised to take the spotlight off students with developmental disabilities for fear they would once again get left behind.

Neither Thomas nor Moseley said when the decision would be made on early termination. Moseley has indicated he plans to complete a report on whether Providence is in substantial compliance with the Interim Settlement Agreement before he steps down as monitor on Sept. 30.

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

Charles Moseley

By Gina Macris

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

Brian Gosselin

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

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

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

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

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

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

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

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

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

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

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

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

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

Image courtesy of RI Capitol TV

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chart Courtesy of CPNRI

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

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

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

chart courtesty of PHI and CPNRI

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

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

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

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

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

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

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

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

Mark Podrazik * Photo By Anne Peters

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

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

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

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

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

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

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

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

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

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

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

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

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

· $1.3 million for increased costs of providing services

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

· $500,000 in other priorities.

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

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

• $2.7 million for increased costs in providing services.

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

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

Moseley said all his figures were rounded off.

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

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

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

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

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

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

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

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

By Gina Macris

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

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

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

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

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

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

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

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

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

• are familiar with the way different states manage services

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

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

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

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

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

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Read the full monitor’s report here.

For RI Adults With DD, Work Is A Choice, Not A Mandate, Says Federal Civil Rights Consent Decree

Kiernan O’Donnell, foreground, addresses DDD public forum in East Providence, RI, while Charles Moseley, independent federal court monitor in Rhode Island’s Olmstead consent decree case, participates via video link. All photos by Anne Peters.

By Gina Macris

It’s no secret that Rhode Island’s Olmstead consent decree has put the focus on employment opportunities – and challenges –in the system of state-funded services for adults with developmental disabilities.

Four and a half years after the consent decree took effect, the state Division of Developmental Disabilities (DDD) still finds it necessary to punch holes in the myths about what the state’s Employment First policy means and doesn’t mean. Employment First was created to respond to the consent decree’s push toward integration of those isolated in sheltered workshops and day programs, as required by the Olmstead decision of the U.S. Supreme Court, which reaffirmed a key part of the Americans With Disabilities Act.

“We’ve had a lot of people worry that if they don’t work, they won’t get benefits,” said Anne LeClerc, Associate Director of Program Performance.

That’s simply not true, LeClerc told about 80 people crammed into a room at the East Providence Senior Center and an unknown number of others who watched the presentation live on Facebook from the comfort of their homes.

Tina Spears, L, hands Microphone to Anne LeClerc

LeClerc said there’s there’s no requirement that adults with developmental disabilities who receive state-funded services must work, but if they want to be employed, the state will provide job-related supports.

“Not everyone has to work, or is ready for work now,” she said. Individuals may have health or family issues that prevent them from working. It may take “a long time” for people to prepare for work in various ways, LeClerc said.

The federal court monitor in the consent decree case, Charles Moseley, chimed in via video link:

The consent decree requires those who choose not to work to make an “informed choice,” he said. What makes a decision an informed choice are trial work experiences, with the appropriate supports, and a vocational assessment, Moseley said.

And back in East Providence, Kiernan O’Donnell added a third element of informed choice: individualized benefits counseling from a specially-trained expert in how a paycheck might affect Social Security or other financial support received by a person with disabilities.

O’Donnell is co-president of the Rhode Island chapter of the Association of People Supporting Employment First (RIAPSE.)

He said Social Security benefits are so complicated that only specially trained counselors are qualified to recommend work options to individuals receiving public assistance. (The Paul Sherlock Center on Disabilities at Rhode Island College offers free Work Incentives Public Information Sessions. For more information, click here.

The “Variance”

LeClerc, meanwhile, said individuals 62 years old and older who don’t want to work may simply choose to retire.

People younger than 62 who opt out of the job market must submit a variance to the state’s Employment First policy, LeClerc explained, “A variance is just documentation of a decision not to work,” she said.

The variance form asks why “work is not right for you,” LeClerc said. Someone prevented from working by poor health need simply note that as a reason, but no medical documentation is necessary, she said.

Ken Renaud, a leader in the family advocacy group RI FORCE, asked whether the variance is something that must be revisited “every single year.”

“The variance itself is a one-time thing,” LeClerc replied. During individual service plan meetings held annually, those individuals who have previously chosen variances will simply be asked whether they’re still happy with their decisions not to work. If not, they may reconsider.

One member of the audience told LeClerc about the experiences of individuals over retirement age whose individual service plans were rejected because they didn’t have a career development component. Individual service plans are important documents used by DDD to document the services that Medicaid will pay for.

LeClerc said the service plans shouldn’t have been turned back; the career development component could have been simply marked “retired.”

“We’ll work on making that clearer,” she said.

If the problem occurs again, LeClerc told the woman, consumers and their advocates should get in touch with her. ( LeClerc can be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Fact vs Myth

O’Donnell, the RIAPSE leader, sought to give the audience a toolkit for myth-busting that went far beyond the correction of one falsehood. “Knowledge is power,” he said. “Lack of knowledge can prohibit people from pursuing their dreams. Myths sometimes rule the dreams you pursue or don’t pursue.”

O’Donnell’s general advice: get the information in writing. APSE, the national organization of supported employment advocates and professionals, offers its own fact sheet busting the “Top Ten Myths” of Social Security Benefits.

“Let’s not get hung up on barriers when we are able to combat them with knowledge,” he said.

Worries About Funding

Mary Beth Cournoyer, who serves on a community advisory committee, the Employment First Task Force, said that many people looking for jobs need “customized employment” – self-employment or work individually designed to match the skills of a particular employee with the needs of an employer.

For example, someone with a disability can be trained for a part-time job running the paper shredder at a large law firm, freeing support staff for other duties.

The idea of customized employment is “new to families,” said Cournoyer, who has a son with a developmental disability. Parents feel that they may need 30 hours of job coaching, but only have enough funding for 10 hours, she said.

“I don’t want to see jobs and capacity missed because we don’t have enough money for a coach,” she said.

Moseley said Cournoyer’s concerns about funding for services “is a great question for Kerri” – a reference to Kerri Zanchi, Director of Developmental Disabilities.

Funding “is a challenge. It might change,” he said.

Moseley segued to initiatives that might improve the outlook for adults with developmental disabilities and their families, including a commission, chaired by State Rep. Louis DiPalma, D-Middletown, to study the effectiveness of the current funding system. The commission is expected to convene in October.

In August, Moseley said, he talked to private service providers about changes they are making. “There are a lot of exciting things moving forward, but also barriers,” he said.

Zanchi, meanwhile, ticked off initiatives of DDD, including the preparation of an application to the Centers for Medicare and Medicaid Services for approval of a pilot Alternative Payment Model that would give providers a flat rate for a defined bundle of services rather than the current fee-for-service reimbursements that providers say restrict their flexibility to meet clients’ needs.

Zanchi and LeClerc both emphasized improvements in data collection that will help them better identify and respond to the needs of those served by the developmental disability service system.

“Thanks for being here,” LeClerc said with a smile, addressing the audience, “and for bringing these things up constantly.”

Met by a round of laughter, LeClerc added, “I mean that sincerely. “

Lenore Costa

One mother, Lenore Costa, said her son, who has Fragile X syndrome, has not been able to get any developmental disability services in the year the family has lived in Rhode Island. Costa said she moved from Massachusetts, where her son received day, evening and weekend services, to take advantage of a professional opportunity as a nursing executive.

It’s a big job, she said, but her son’s needs are also a full-time job.

Zanchi connected Costa with a DDD social work supervisor, who sat down with her after the meeting.

Deborah Masland, part of a consumer panel that offered commentary on the meeting, said “people’s jobs should not be threatened because they can’t find services for a loved one.”

Masland works at the Rhode Island Parent Information Network with families facing special health care needs and has a 19- year-old daughter, Olivia, who has loved her 12 years of schooling and is now in her first transition year.

Olivia has a work trial in food prep at a Chili’s restaurant 45 minutes a week, and while she’s excited about her t-shirt, her hat, and her special work shoes, her mother said she’s not sure that the experience is preparing her for a job.

Quality of Leisure Activities Questioned

Anne Peters said her 27-year-old daughter has been looking for a job for three years, and any work she finds will be part time. With that in mind, she asked whether the emphasis on jobs is jeopardizing the quality of non-work day services.

Heather Mincey, the assistant director of developmental disability services, said that was a hard question to answer on an individual basis.

Job-related supports cost more than non-work services, but they both come out of a fixed funding authorization for a particular individual. Mincey suggested that over time, the funding for work and non-work activities will even out if job supports eventually can be faded away.

With the closing of some day programs, Peters said, there are a “lot of movies and malls” for “non-work services,” suggesting that more purposeful activities would better meet quality standards.

Mincey acknowledged that it is difficult for providers to shift from center-based care to integrated services. She noted that DDD recently hired two quality assurance officials to work with LeClerc for a year on program improvements.

Peters added that addressing high turnover and low wages among support staff is a critical part of any solution to the problems the system faces.

Christopher Semonelli, vice-president of RI FORCE (Families Organized For Reform Change and Empowerment) said members of the General Assembly need to hear the breadth and depth of concerns expressed at quarterly public forums.

He said RI FORCE will sponsor a candidates’ forum Oct. 3 from 4 to 7 p.m. at the Newport campus of the Community College of Rhode Island.

Advocacy is “huge,” he said, but “you can only eat an elephant one bite at a time.”

(RI FORCE streamed the public forum live on Facebook and the video remains on its Facebook page.)

RI DDD Forum Sept. 11 To Feature Q & A With Olmstead Consent Decree Monitor

(The date for the forum initially was incorrect in the headline for this article. It has been corrected.) 

By Gina Macris

The independent federal court monitor overseeing Rhode Island’s compliance with the integration mandate of the Americans With Disabilities Act is scheduled to make a rare public appearance outside the courtroom  – by video conference – Sept. 11 at a quarterly community forum in East Providence sponsored by the state Division of Developmental  Disabilities (DDD).   

According to a DDD announcement, the monitor, Charles Moseley (pictured at left). The forum will focus on employment–related issues, including what it means to make an “informed choice” about work, and how someone who chooses not to work can apply for a  variance to the employment first  policy.

The Sept. 11 meeting will be at the East Providence Senior Center, 610 Waterman Ave., from 4:30 to 6 p.m.

The 2014 agreement with the U.S. Department of Justice requires the state to de-segregate daytime work and non-work services for adults with developmental disabilities over a 10 year period to comply with the integration mandate embodied in Title II of the ADA.

The integration mandate was re-affirmed by the Olmstead decision of the U.S. Supreme Court in 1999, which involved two plaintiffs with developmental disabilities who had been held in a Georgia mental hospital for years after their treatment concluded because of a dearth of housing in the community.  

Rhode Island’s was the first Olmstead consent decree in the nation – but not the last - that addressed the integration of daytime activities for adults with developmental disabilities.  Earlier agreements which drew their authority from the same `High Court decision focused on segregated housing.  

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.

Court Monitor Says Court Order Not Needed To Ensure RI DD Funding; State Budget To Move Forward Thursday In House Finance Committee

By Gina Macris

An independent court monitor has advised a federal judge that a court order isn’t necessary to ensure adequate funding and staffing for Rhode Island’s developmental disability services.

In a June 1 report to Judge John J. McConnell, Jr. of U.S. District Court, the monitor, Charles Moseley, cited recent assurances from Governor Gina Raimondo that revisions will be made to the state budget for the fiscal year beginning July 1 to enable the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to continue implementing a 2014 consent decree correcting violations of the Americans With Disabilities Act (ADA.)  

After a positive report from the semi-annual Revenue Estimating Conference May 10, House Speaker Nicholas A. Mattiello and Senate President Dominick J. Ruggerio took the lead in promising to restore $18.4 million in reimbursements to private service providers that Raimondo had originally eliminated from her budget proposal for the fiscal year beginning July 1.  Raimondo's original proposal had been unacceptable to Moseley, who had told McConnell in April that the cut would leave BHDDH unable to maintain consent decree reforms.  

The May  Revenue Estimating Conference concluded the state would take in a total of $135 million more than had been previously projected to close out the existing budget and to fund the next one, but Mattiello warned that extra cash should not be viewed as a panacea, because of multiple demands on the state’s resources.

Those obligations could include an estimated $24 million in federal and state Medicaid funds the state has not budgeted for retroactive payments to nursing homes. Whether the state must make those payments is wrapped up in a lawsuit brought by nursing home operators in state court over reductions in reimbursements imposed by the Raimondo administration.

The nursing homes prevailed in the litigation and the state failed to file a timely appeal, with the administration blaming a lawyer at the Executive Office of Health and Human Services who simply missed a May 23 filing deadline. The state is now trying to convince the judge in the case to accept an appeal anyway.  

Payments to nursing homes would eat up about $12 million in state revenue, or 8 percent of the $135 million in extra state revenue lawmakers had been planning to use to fill holes in the budget – including reimbursements to private providers of developmental disability services. (The remainder of the retroactive payments would come from the federal government's share of the Medicaid program.) 

The revised budget is scheduled to go before the House Finance Committee the evening of Thursday, June 7.

Besides an enhanced bottom line on funding, the court monitor will be looking for the addition of three BHDDH employees to staff a quality improvement unit which is deemed critical to ensuring that current and future reforms adhere to consent decree standards.

It is not immediately clear how those three added staffers would be used. As late as the first week of May, the monitor and BHDDH officials had been at odds about both the number of officials needed in the quality improvement unit and their respective roles.   

The consent decree gets its authority from the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that Title II of the ADA requires services for disabled individuals to be offered in the least restrictive environment that is therapeutically appropriate. That environment is presumed to be the community.

In 2014, the U.S. Department of Justice cited Rhode Island’s overreliance on sheltered workshops and adult day care programs as violations of  Title II of the ADA. In the consent decree, the state agreed to ten years of federal oversight while it transforms the segregated system of daytime services to an integrated one based in the community.

This article has been corrected to show that, depending on a judge's final ruling, half of an unbudgeted $24 million in retroactive payments to Rhode Island nursing home operators would come from state revenue.

RI Gov Pledges To Support "Current Level" Of DD Services In FY 19; No Fiscal Details Yet

By Gina Macris

Rhode Island Governor Gina Raimondo says her administration is committed to maintaining “the current level of services” for adults with developmental disabilities in order to meet the demands of a 2014 consent decree between the state and federal government.

But in a letter to a federal court monitor in the consent decree case, the governor did not spell out how much money the administration believes the state should spend.

The consent decree is a 2014 agreement between the state and the U.S. Department of Justice (DOJ) which requires Rhode Island to correct violations of the Americans With Disabilities Act by enabling adults with intellectual or developmental challenges to seek competitive employment and enjoy community-based, integrated non-work activities.

In the letter to the monitor, Raimondo wrote: “I will continue to work collaboratively with the General Assembly on all funding recommendations, including those supporting efforts under the Consent Decree.”  

Following better-than-expected revenue projections issued May 10, both House and Senate leaders said that at a minimum, they support restoration of an $18.4 million reduction in reimbursements to private service providers that Raimondo has proposed for the budget cycle beginning July 1.

The consent decree monitor, Charles Moseley, had sought three specific assurances from Raimondo, in the form of a letter or statement to U.S. District Court Judge John J. McConnell Jr.

Moseley asked that the letter or statement say that the budget would:

•  “be re-set to reflect current FY 2018 expenditure and service levels”
•  “continue to be revised throughout FY 2019 as needed to fully fund the provision of services”           consistent with requirements of the consent decree
•  provide “sufficient personnel resources” to the Division of Developmental Disabilities to   “carry out  quality improvement activities consistent with Consent Decree requirements.”

Raimondo’s letter to Moseley, dated May 14, contains no details about any budget changes she may be planning. Nor does it mention quality improvement activities. 

On May 18, a spokeswoman for Raimondo said that “increasing funding for developmental disability support services is one shared priority for which she (the governor) continues to advocate as we further engage in discussions with the General Assembly about the final budget."

Asked whether the governor supports the employment of adults with disabilities as one of the state's workforce solutions, the governor's spokeswoman pointed out the new Real Pathways RI program. It is a workforce investment initiative that focuses on job-seekers who face various barriers to employment. Among the public, private, and non-profit organizations that participate in the program are four providers of developmental disability services, who are working with Home Depot and CVS to match their clients to jobs. 

Moseley had requested a statement from the governor on her position as he prepared to make recommendations to McConnell about what court action, if any, might be needed to ensure that compliance with the consent decree moves forward.

At the most recent court hearing April 10, the judge directed Moseley to find out if there was consensus among state officials and DOJ lawyers about a course of action the court might take to ensure enough funding. Failing such an agreement, McConnell said, he would hold an evidentiary hearing to lay the groundwork for a court order.

Moseley has concluded that Raimondo’s proposed budget, as it now stands, is insufficient to continue to support the modest salary increases to direct support workers put forward by Raimondo and approved by the General Assembly in the last two years. In addition, it would not allow the state to “continue services at current levels,” he said.

The monitor described his efforts to get a sense of the state’s position a  letter to Eric Beane, the Secretary of Health and Human Services, dated May 9. That was a day before the state’s revenue estimating conference concluded that revenues were projected to exceed previous estimates by $135 million through the end of Fiscal 2019.

A week earlier, on May 2, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) did not dispute the monitor’s conclusions about the inadequacy of the proposed budget for the next fiscal year, Moseley wrote to Beane.

But the director, Rebecca Boss, “affirmed governor’s commitment to fully fund Consent Decree activities during FY (Fiscal Year) 19 and said that no rate cuts in reimbursements or spending reductions were being proposed,” according to Moseley.

“She noted that the Governor had demonstrated a history of including supplemental funding to the DD (developmental disabilities) services budget when expenditures exceeded enacted amounts and would continue to do so if necessary,”  Moseley wrote.

On separate occasions, both Boss and Beane said assurances about the state’s support of the consent decree could be sought from the governor, Moseley recalled.

For some time, Moseley has said that the Division of Developmental Disabilities needs four fulltime inspectors to conduct onsite reviews of all three dozen private service providers every two years and to ensure their services meet the standards of the consent decree.

He said Kerri Zanchi, director of developmental disabilities, and Kevin Savage, the BHDDH licensing administrator, “argued strongly” during a meeting with Moseley May 2 that two inspectors, or “surveyors” as they will be called, “would be sufficient to meet the need and ensure compliance” along with an data analyst and “other measures.”  Zanchi was to provide a subsequent written analysis of the rationale for the BHDDH approach.

In an earlier report to the monitor, BHDDH officials explained their plan for a centralized, departmental quality assurance unit. In the first year, the two surveyors would be supervised by Anne LeClerc, Associate Director of Program Performance in the Division of Developmental Disabilities, which is also to have the benefit of its own data analyst and a divisional operations manager.

In this initial year, the new “surveyors” will enable the division to rigorously analyze the effectiveness of its existing day services to better plan for future improvements, according to the state’s report to the monitor April 30.

In the second year, however, the surveyors will be assigned to a centralized quality management unit to connect the BHDDH investigatory unit with licensing and certification of private service providers, according to the state’s quarterly report. 

Raimondo's spokeswoman said she supports the BHDDH quality improvement plan. 

To date, there have been no filings in the court record indicating what Moseley will recommend to the judge.

To read Governor Raimondo's letter to the consent decree monitor, click here.

To read the consent decree monitor's letter to the Secretary of Health and Human Services click here.

RI Consent Decree Monitor Will Draw Up Proposed Judicial Order to Ensure Adequate State Funding

By Gina Macris

Judge John J. McConnell, Jr. of U.S. District Court signaled during a hearing April 10 that he is prepared to act to ensure that Rhode Island complies with a requirement of a 2014 consent decree that calls for “timely” funding of integrated services for adults with developmental disabilities.

But it is not yet clear what judicial action might look like in relation to the language of the consent decree, which does not quantify compliance in terms of dollars and cents.

Governor Gina Raimondo has proposed a developmental disabilities budget for the fiscal year beginning July 1 that would cut $18.4 million in federal and state Medicaid funds from current spending limits on privately-operated developmental disability services for adults and another $3 million from a state-operated network of group homes.  

That reduction comes on the heels of an already-underfunded system of services and would “permanently derail compliance with the consent decree,” said Jeffrey Kasle, lawyer for nine service providers, who spoke during the informal hearing, or “status conference” at the invitation of an independent court monitor.

The monitor, Charles Moseley, said he would  draw up a list of proposed funding-related actions for the judge to consider. Marc DeSisto, the state’s lawyer, and Victoria Thomas, who represented the U.S. Department of Justice, each said they wanted to review the proposal before the judge takes action.

If there is no consensus, McConnell said, he will hold a formal hearing and take evidence before issuing an order.

Since 2016, when he began reviewing the consent decree, McConnell has tried to make information about compliance accessible to the public, insisting that periodic conferences be held in open court and stressing the informality of the proceedings.

The review on April 10 was no exception, as the lawyers and state officials spoke from a podium facing the audience in the towering, mahogany-paneled courtroom, so spectators could better hear the proceedings. McConnell, wearing business clothes instead of his judicial robes, sat near the court stenographer just inside a circular bar that normally separates litigants from the public. 

The informal atmosphere, however, belied the gravity of the funding issue, which McConnell called the “elephant in the room,” and its implications for judicial action.

The monitor, Moseley, and lawyers for the DOJ and the providers all concurred in their concerns over funding. 

Officials of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said they needed better data to make a case for a bigger budget and noted that $116 million more will have been spent on developmental disabilities during the Raimondo administration,  between 2015 and 2019, than was spent from 2010 to 2014.

It was in 2014 that Rhode Island was found in violation of the integration mandate of the Americans With Disabilities Act (ADA) by relying on a segregated system of work and non-work activities that could survive on significantly less staffing that is mandated today through the consent decree.

Kasle, the providers’ lawyer, noted that the current administration at BHDDH, led by department director Rebecca Boss and the director of the Division of Developmental Disabilities, Kerri Zanchi, have shown a commitment to collaborating with providers that is the “best in a decade.”

But much of the state’s current compliance with the consent decree occurs because the private providers are doing the work, Kasle said.

“If all they can do is keep people safe,” he said, consent decree compliance will “fall apart.”

A decade ago, direct care workers made $3 to $5 more an hour than minimum wage, Kasle said. The legislative efforts to raise wages in the last two years, which added $11 million to the budget, are appreciated but they have just kept the workers on a par with the minimum wage, he said

For providers,  who can pay only $11 or $12 an hour, “it’s almost impossible to fill jobs,” Kasle said.

And if the state is to integrate individuals with developmental disabilities in the community, allowing them a choice in how their programming will be achieved, the state will need more direct care workers, he said.

Victoria Thomas, a lawyer for the DOJ, said that on the most recent site visit in February, she and her colleagues spoke to a provider who had had to lay off several middle managers because of budgetary constraints.

Employees have seen their salaries cut; paid vacation was eliminated, and workers have had to increase their contributions to health care, Thomas said.

The judge, meanwhile, asked Boss, the BHDDH director, whether the state can comply with the consent decree if Governor Raimondo’s budget for the next fiscal year is enacted without any changes.

Boss said she didn’t know the answer. Nor could she say whether BHDDH could comply with the consent decree if no cuts were made and current spending was maintained. 

Boss said BHDDH is “committed to implementing the consent decree. We want every individual to live in the community as they wish.”

Last fall, Boss submitted her department's budget request for the fiscal year beginning July 1 far higher than what Governor Raimondo later proposed to the legislature.  Boss asked for a total of $278.8 million in federal and state funds, or $28 million more than what Raimondo ultimately submitted to the General Assembly.

In a cover letter, Boss wrote at the time that “any further reductions could have further significant repercussions financially and operationally for the department further impacting some of the most vulnerable citizens within our state.”

For the fiscal year beginning July 1, Raimondo has proposed $250.8 million for developmental disabilities, which is $6.1 million less than the bottom line enacted by the General Assembly for the current fiscal year.

The proposal of $250.8 million is also $21.4 million less than current spending levels. Because of current cost overruns, Raimondo has proposed adding $15.3 million to the existing budget of $256.9 million, for a total of $272.2 million, to fill the budget gap through the end of the fiscal year June 30.

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.