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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Among the needs discussed May 6 are funding for:

  • training and career paths for staffers

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

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

  • Better access to affordable housing

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

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

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

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

Tina Spears, RI Senate Fiscal Aide, Named State's Consent Decree Coordinator

By Gina Macris

Tina Spears              photo courtesy state of RI  

Tina Spears              photo courtesy state of RI  

Tina Spears, a policy analyst in the fiscal office of the Rhode Island Senate, has been named the state’s Consent Decree Coordinator. The coordinator is charged with ensuring cooperation among three departments of state government responsible for reinventing daytime services for teenagers and adults with developmental disabilities to comply with the Americans With Disabilities Act (ADA).

Eric Beane, Secretary of Health and Human Services, announced Spears’ appointment Jan. 12, saying in a statement that she is “well-poised to lead this work, given her longstanding advocacy for children and individuals with disabilities.”

Spears, who has parented a child with a disability, “brings a strong personal commitment to the work” in addition to professional expertise in the state budget and the federal-state Medicaid program which funds developmental disability services, Beane said.

“Her connection to the community and passion for ensuring people have the opportunity to live their life to its fullest potential are welcome additions to the work our team does every day to improve developmental disabilities services in Rhode Island,” Beane said.

Prior to her Senate job, she was government relations director of the Rhode Island Parent Information Network for eight years.

Spears, the fourth consent decree coordinator in three years, succeeds Dianne Curran, who served just seven months before stepping down in September. Curran was preceded by Mary Madden, who stayed in the job a year, from 2016 until 2017, and by Andrew McQuaide, the first coordinator.

In the last several months. Brian Gosselin, Chief Strategic Officer for the Executive Office of Health and Human Services, has been filling in as consent decree coordinator.

The state created the coordinator’s position at the insistence of a federal court monitor overseeing implementation of a 2014 consent decree, which maps out what the state must do to correct the overreliance on sheltered workshops and segreated programs that violated the integration mandate of the ADA. The consent decree draws its authority from the Olmstead decision of the U.S. Supreme Court, which clarified the requirement for integrated services for individuals with disabilities.

 

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

By Gina Macris

 

                                                       This article has been updated .

Dianne Curran                        Photo By Anne Peters

Dianne Curran                        Photo By Anne Peters

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

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

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

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

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

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

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

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

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

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

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

Kerri Zanchi

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Judge, DOJ Praise RI's Compliance Efforts In DD Case; Contempt Hearing Avoided, For Now

By Gina Macris

The state of Rhode Island has done more in the last six months to comply with a federal consent decree aimed at ending the isolation of adults with developmental disabilities than the previous state administration did in the first two years of the agreement. 

That assessment came from the U.S. Department of Justice Sept. 16 in a conference on the status of the 2014 agreement before U.S. District Court Judge John J. McConnell, Jr.   

Because of those efforts, McConnell deferred, for now, a request by DOJ lawyer Nicole Kovite Zeitler that he hold contempt proceedings in early October over the state’s failure to hit specific targets in the order McConnell issued last spring to force compliance with the consent decree.

By signing the consent decree in 2014, the state promised, over a ten-year period, to establish a system of community-based, integrated work and leisure activities for individuals with developmental disabilities that would replace sheltered workshops and segregated day programs. The transition is mandated by the Olmstead decision of the U.S. Supreme Court.  

While acknowledging the state’s intensive efforts, led by Jennifer Wood, Deputy Secretary of Health and Human Services, Zeitler cited two non-compliance issues: the scarcity of young adults with developmental disabilities holding jobs, and the state’s failure to distribute increased reimbursement rates to private service providers by Aug. 1 as the judge had required.  

Wood said rate increases would be implemented Oct. 1. That is the date the computer system will be adjusted to reflect a 36-cent hourly increase, from $11.55 to $11.91, in the average reimbursement rate paid to private service providers.  

Approximately 4000 workers at private agencies will get raises, retroactive to July 1, after their employers start receiving the higher reimbursements. 

Mary Madden, the state’s consent decree coordinator, elaborated on the lack of job placements for young adults. 

Of a total of 151 individuals with intellectual disabilities who left school in the 2013-2014 or 2014-2015 academic years, 99 are receiving adult services, including 79 who are receiving employment-related services and 29 who are actually employed, Madden said. 

She did not have data for the 2015-2016 academic year. 

The employment number is “not where anyone wants it to be,” Madden said.   

Of the 151 identified, 52 individuals are not enrolled for any services. 

Later, Zeitler said the notion that 52 young adults have not been connected with adult services is a serious concern. 

Charles Moseley, the independent monitor in the case, said he wanted to echo both Zeitler’s concerns and her praise of the state’s efforts so far. 

He said he “wrestled with the idea of a show-cause hearing,” a proceeding that might lead to a contempt order, but decided against recommending it, because he believes the state can work with him to plan and provide employment services. 

While McConnell noted that a missed deadline in a judicial order is a serious issue, he deferred to Moseley’s confidence that he can work things out with the state. 

“I tend to be a ‘half-full’ kinda guy,” McConnell said, explaining his decision. 

“Some may call me Pollyanna-ish,” he said, but the compliance effort put forth by the state in the last six months “deserves a compliment and a thanks.”  

McConnell said state government doesn’t move quickly, even with court sanctions hanging over its head, as they were after McConnell issued a 22-point compliance order May 18. 

The fact that the Governor and the General Assembly acted late in the legislative season to add $11 million to the developmental disabilities budget should be acknowledged, McConnell said. He also thanked Health and Human Services Secretary Elizabeth Roberts, Deputy Secretary Wood, and her administrative team. About half a dozen of them attended the hearing.  

“We wouldn’t be here if it weren’t for the Department of Justice,” McConnell continued, praising its “tenacity and advocacy in taking on an incredibly complex task for those who wouldn’t otherwise have a voice.” 

But McConnell said he wasn’t about to unfurl a “Mission Accomplished banner” just yet.  

A report that the monitor filed with the court on the eve of the hearing outlines a plan to put the state on short-term deadlines for developing employment strategies for young adults and making sure all those eligible for services are identified. The employment-related strategies are due Oct. 1. 

 Moseley gave the state until Nov. 15 to identify all young adults who have left school in the last three academic years who are eligible for developmental disability services, but he wants to hear how it will approach that problem by Sept. 30. 

The effort will require cooperation by the state Department of Education, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, and the state Office of Rehabilitation Services. 

Moseley has expressed concern that the state is missing those who do not have an intellectual disability but are eligible because of a developmental delay.   Depending on the individual, a young adult on the autism spectrum may fall into the latter category. 

With the average cost of services at about $59,000 a year per person, Moseley’s directive for better identification of eligible young adults has the potential to add significantly to the developmental disabilities budget. 

For example, it would cost an estimated $3 million a year to serve the 52 young adults who have been identified but who are not enrolled in developmental disability services. 

Moseley, meanwhile, reflected on concerns expressed by the DOJ about the need for quality career development planning, a newly-implemented exercise that is intended to drive thoughtful, individualized job searches. 

“Person-centered planning, person-centered thinking, is a challenge that is facing all states. It needs to be done on an ongoing basis,” he said. 

Earlier in the hearing, Deputy Secretary Wood said the new chief employment specialist, Tracey Cunningham, had personally trained more than 200 people in how to write career development plans. 

But Moseley said it’s not a matter of one training. “You have to learn it and live it,” he said. 

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI Officials Correct Figure in Monitor's Report; Say Rate Hike Will Go To DD Service Agencies

By Gina Macris

All the workers who provide direct support services to adults with developmental disabilities in Rhode Island won’t be getting raises to at least $11.55 an hour, as indicated in the most recent report of a federal court monitor in the so-called “sheltered workshop” consent decree case.

The report from the monitor, Charles Moseley, says that the state Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH) “will adjust all rates for Direct Support Professionals to a base rate of $11.55 an hour.”

 In reality, BHDDH will raise the “base rate” the state pays to the private agencies from $11.55 to $11.91 an hour, an increase of 36 cents; the private agencies, in turn, must use that new hourly figure to cover both salary increases and fringe benefits for their employees.

That was the word Sept. 13 from Mary Madden, the state’s consent decree coordinator, and Jennifer Wood, Deputy Secretary of Health and Human Services.

Wood also said it is impossible to determine how much of an hourly wage increase each worker will actually receive.  

 Approximately 4,000 workers staff the private agencies serving Rhode Islanders with developmental disabilities under contracts with the state. These direct support workers now make an average of about $10.75 an hour, although starting pay is typically minimum wage, or $9.60 an hour.

Different agencies have different pay scales and different arrays of benefits, Wood said. The General Assembly set aside about $5 million in the current budget for raises to direct support workers and for increased employer costs, but did not specify how much was to go into each category, she said.

One part of an order issued in May by U.S. District Court Judge John J. McConnell, Jr., required the state to “appropriately increase salaries, benefits, training, and supervision for Direct Support Professionals and Job Coaches” by Aug. 1.

The increases, retroactive to July 1, have not yet gone into effect, but Moseley, the monitor, said the judge’s order had been “provisionally met” because the state had submitted a plan that describes how the increases would be handled.

Before Moseley will sign off completely, he said, he needs more documentation in the plan, as well as confirmation that BHDDH has disbursed the money for the rate increases to developmental disability service agencies.

The issue of pay for workers was one of numerous points covered in Moseley’s report, submitted to McConnell Sept. 9 in anticipation of the judge’s review of the case Sept. 16. The session begins at 2 p.m.

Task Force Commentary on Monitor’s Report

Meanwhile, the monitor’s report also prompted criticism at a meeting of the Employment First Task Force Sept . 13.

Claire Rosenbaum questioned Moseley’s conclusion that the state had met the Judge’s Aug. 1 deadline for making it easier for providers to offer employment-related services to adults with developmental disabilities.

“I haven’t seen anything that offers supported employment services for my daughter, and we’re a month and a half past the implementation date,” Rosenbaum said. She serves on the task force as Adult Supports Coordinator for the Sherlock Center on Disabilities at Rhode Island College.

Nor did her daughter’s counselor at the state Office of Rehabilitation Services (ORS) know anything about career development planning, Rosenbaum said, even though the monitor said ORS, as well as BHDDH, and the Rhode Island Department of Education (RIDE) had all implemented training in the process of career development planning by the end of July as required by the judge’s order.

The judge’s order included several mandates related to supported employment, all with an Aug. 1 deadline.

 The requirements included a change in the model for reimbursing provider agencies, and a change in the financial authorizations made to individuals to pay for what Moseley called the “Person Centered Supported Employment Services Program.” 

The current authorization method requires individuals seeking job-related services to trade in time allocated to another category of support.

Madden acknowledged that the model for changing reimbursement to service providers had not yet been put into practice.

“What irks me,” Rosenbaum said, “is this status report says ‘provision met’, when it clearly has not been met.”

The state has said the reimbursement model would change for clients of agencies chosen to participate in a pilot program of performance-based contracts intended to provide the supports necessary to enable individuals with developmental disabilities to find and keep regular jobs.

BHDDH is not yet accepting applicatios for that pilot program, although Moseley said he is satisfied with the state's plan for the program . The state's lawyer will file the detailed plan with the court some time this week, according to Wood. 

In any event, the judge is requiring performance-based contracts for all service providers in the state by Dec. 31. 

Kevin Nerney, the task force chairman, took issue with the term “Person Centered Supported Employment Services Program” to describe what supported employment services are supposed to provide.

Such individualized, employment-related services have not been rolled out to direct support staff at provider agencies, he said. Until employment-related services have been put in place, he said, they should not be elevated with an important-sounding title.

The task force was created by the 2014 federal consent decree, in which the state agreed to correct violations of the Americans with Disabilities Act by moving from segregated sheltered workshops and day programs to supports for community-based employment and activities for adults with developmental disabilities.

The consent decree envisioned the task force as a bridge between state government and the community, although the group is still exploring how its role will play out.  Its next meeting is scheduled for Oct. 11.

 

 

 

 

Parental Concerns Over RI Consent Decree Persist; State Says No One With DD Will be Forced Into Job

 All Photos by Anne Peters

 All Photos by Anne Peters

Jeanne Connery, mother of a young adult on autism spectrum, talks about a job trial that did not go well for her daughter during Wednesday's public forum at the Buttonwoods Community Center in Warwick.

By Gina Macris

“You threw the baby out with the bathwater when you eliminated sheltered workshops,” Brian Newton, the father of a woman with developmental disabilities, told Rhode Island officials at a public forum in Warwick Aug. 17.

In reality, most, but not all, sheltered workshops in Rhode Island closed abruptly in the wake of U.S. Department of Justice findings in 2014 that segregated employment – at sub-minimum wage – violated the Americans With Disabilities Act (ADA).

“What happened to my daughter’s right to work in a sheltered workshop?” he asked. She and her friends “were happy making 5, 7, 12 dollars a week,” Newton said.

“You have to admit there’s a certain population that will never work” at a regular job, he said.

Newton looked straight at Jane Gallivan, Rhode Island’s interim Director of Developmental Disabilities, who happens to have three decades’ professional experience in Maine and Delaware and a national reputation among her peers as an innovator.

Gallivan smiled as she looked back at Newton and slowly shook her head from side to side, kindly but firmly.

“Not to go there,” said Gallivan, who has extensive experience promoting job opportunities for individuals facing intellectual challenges.

Newton persisted, saying there’s a “certain percentage” that won’t be  “bagging groceries or doing piece work.” 

“I hope not,” Gallivan replied. “I hope it’s customized to what they can do.”

Newton:  “They have to have somebody with them.”

Gallivan

Gallivan

Gallivan: “People have job coaches now. You can have a job coach for a very long time.”

 Jeanne Connery, the mother of a 20-year-old woman on the autism spectrum, said her daughter has a high aptitude for math and science but does not connect with people.

She was placed in a job trial in a retail store, where she tagged and stocked shoes and boots, an experience which was not a good match for her, Connery said.

What her daughter needed was the Job Club at the Groden Center, a group that talked about the social and behavioral pointers that do not come intuitively to people on the autism spectrum, Connery said.

That job club did not have the capacity to take on another group member, according to Joseph F. Murphy, administrator in the state Office of Rehabilitation Services.

Mary Madden, Rhode Island’s Consent Decree Coordinator, said, “The bottom line is that this is a free country. Nobody is going to make your son or daughter go to work at a job that isn’t appropriate to them. I just want to say that there are a lot of misconceptions out there.”

There are now “400 people working in the community,” Madden said.

Most of them “are not bagging groceries or working at Home Depot,” Madden said. “We haven’t done a good job getting stories out” about individuals with unique skills matched to the needs of a company.

In fact, one person with a unique job was in the audience. Mark Susa of Warwick, with the help of his father, John Susa, and paid support staff, trains peers with disabilities – readers and non-readers alike -  to use public transportation independently.

Mark Susa also serves on the Board of Directors of the Rhode Island Public Transit Authority. 

Madden, meanwhile, said that regardless of the 2014 consent decree which mandated integration of individuals with intellectual and developmental disabilities,“people should be doing meaningful things every day.

Jennifer wood

Jennifer wood

“Not everyone is in the community all of the time. People only tend to work 10, 15, or 20 hours a week. They should be able the rest of the time to do something meaningful,” she said.

Gallivan, Madden and others, including Jennifer Wood, Deputy Secretary of Health and Human Services, gave an audience of about 75 people progress reports on budgetary and programmatic fronts since the last community forum in late April.

Among other things, front line support staff will see wage increases in their paychecks by October 1, along with a lump sum retroactive to July 1.

The General Assembly earmarked $5 million for wage increases to some 4,000 direct support staff in the current budget. The increase will average about 30 cents an hour, or about $600 a year, before taxes, based on a 40-hour work week.  

Another $6.8 million in the budget will be set aside for performance bonuses as private service providers meet certain benchmarks in moving clients into jobs in the community and helping keep those jobs.

During the last two months, there has been nearly a complete turnover in the leadership of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, with two key positions yet to be filled.

The state is looking for a new departmental director to succeed Maria Montanaro, who left at the end of June, as well as a permanent Director of Developmental Disabilities to replace Charles Williams, who retired at the end of July.

In the meantime, the deputy BHDDH director, Rebecca Boss, serves as acting director. She attended the community forum.

Gallivan said she can remain as Interim Director of Developmental Disabilities only until the end of September.

Recently retired from the top developmental disabilities post in Delaware, Gallivan had promised her mother, now 101 years old, that she could spend winters with her in her home in Florida. That was before Rhode Island came calling. Gallivan's mother is spending the summer on Cape Cod. 
“How many more winters are we going to have together?” Gallivan said. “That’s why I’m not going to continue much longer” than September, she said.

Wood, the Deputy Secretary of Health and Human Services, quipped that Gallivan’s mother has, in effect, set the timeline for filling the developmental disabilities director’s job.

Gallivan said the challenges Rhode Island faces are “not very different than in many of the other states.”

“We need to have a strong vision of what it is we want to have in Rhode Island,” Gallivan said. “That’s my task when I’m here.”

She indicated there are conflicting internal and external pressures on state government with regard to developmental disabilites.

“Internally, there’s a lot of pressure to deal with rising costs. Externally, the federal Centers for Medicaid and Medicare Services,  “who give us 50 percent of the money, wants us to look at services differently.”

By 2019, all states must provide Medicaid and Medicare services in all categories in the least restrictive setting that is appropriate, according to the latest rules of the CMS. The rule change is in keeping with the Olmstead decision of the U.S. Supreme Court, which clarified a mandate for integrated community-based services in Title II of the Americans With Disabilities Act.

The Olmstead decision also forms the legal basis for the 2014 consent decree in Rhode Island, which affects only daytime supports for individuals with intellectual or developmental disabilities.

Gallivan was asked about the Supports Intensity Scale, (SIS) a controversial needs assessment questionnaire that is used to develop individual funding allocations.

She said the Division of Disabilities “has begun to take a close look” at variability in the scores of the SIS at it has been administered in Rhode Island.

For an individual with developmental disabilities, the results of periodic reassessments are supposed to be relatively stable, because the need for support generally does not change dramatically over a lifetime.

However, analyses of SIS scores performed by a healthcare consulting company under contract to the state show that 46 percent of individuals who were re-assessed showed changed levels of need – and funding.

The review of the use of the SIS is “high on the agenda,” Gallivan said.

Sue Joinson  asked whether there will be an “opening of restrictions on residential placements,” which appear to be available only to families who are in crisis.

“Why is it that I can’t get a concrete plan” for the transition of the younger of her two daughters with developmental disabilities? she asked. She is 60 and her husband is 70, Joinson said.

Gallivan said residential services have been identified “as a need.”

“We need to evaluate all residential options” including shared living, “and move slowly,” she said.

Wood, meanwhile, said that the legal framework of the “least restrictive environment” in the ADA means that state policy does not assume that a group home is the most appropriate residential setting for an individual with developmental disabilities.

The state must offer a “continuum” of options suited to individual needs, she said.

 

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

Jennifer Wood    Photo by Anne pETERS

Jennifer Wood    Photo by Anne pETERS

Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DD Service Provider Takes 'Wait and See' Attitude on Budget, Citing History of Disappointment

By Gina Macris

Until Rhode Island’s appropriation for developmental disabilities is released to the agency that administers it, the amount of money that is finally approved by the General Assembly will be  “just a number,” according to a member of the Employment First Task Force who follows legislative affairs.

photo by anne peters 

photo by anne peters 

Tom Kane, (left), CEO of AccessPoint RI, a provider of developmental disability services, said that in the past several years, there have been three unsuccessful attempts to raise the pay of support staff for adults with developmental disabilities.

All the extra money, between $4 million and $9 million in a single fiscal year, has gone instead to fill a structural deficit in the budget of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), Kane said.

On Wednesday, June 15, the House is expected to vote on an appropriation that would add $9.1 million for raises for about 4000 workers and create a new reimbursement method for some two dozen agencies providing most of the direct services for individuals with intellectual or developmental disabilities.(

The budget proposal voted out of the House Finance Committee, however, does not include Governor Gina Raimondo’s request for $5.8 million for a caseload increase.

Kane indicated that amount of money could also represent the structural deficit in the next fiscal year's developmental disability budget. BHDDH officials say the deficit averages $4.6 a year.

Based on past experience, the money set aside for raises could once again be reserved to fill the deficit, Kane told the group.

The Employment First Task Force was created by a 2014 federal consent decree to serve as a bridge between the community and state governmental agencies that administer developmental disability services. The decree resulted from a federal investigation that found Rhode Island’s sheltered workshops violated the the integration mandate of the Americans with Disabilities Act., clarified in the 1999 Olmstead decision of the U.S. Supreme Court.

Mary Madden, the state’s consent decree coordinator, said, “People at the General Assembly are not into the consent decree at all.”

They don’t understand why developmental disability services cost so much, she said,  because they don’t understand “what it is to provide support 24 hours a day.”

Whatever figure is adopted – the current proposal has a bottom line of about $246 million dollars – the U.S. Department of Justice and an independent court monitor will review it. If either of them has the opinion it is not enough for the state to comply with the consent decree, they could ask the judge in the case to hold a show-cause hearing as to why the state should not be held in contempt.  

Charles Williams to Retire; Second RI Developmental Disabilities Official to Announce Departure

By Gina Macris

Williams                                          Image courtesy BHDDH

Williams                                          Image courtesy BHDDH

Charles Williams, Director of the Division of Disabilities of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), confirmed today (June 3) that he will retire July 22.

 Williams is the second high-profile figure within BHDDH to announce his departure in two days. On June 2, the department director, Maria Montanaro, announced her resignation effective June 24. 

Williams, who joined BHDDH in 2005, said he had always planned to remain in state government for ten years, long enough to become vested in the state pension system. Williams marked his 10th anniversary in state government last October and celebrated his 71st birthday in January. 

In a telephone interview, Williams said that his retirement has nothing to do with either the federal government’s ongoing intervention in daytime programs for adults with developmental disabilities or the recent death of a resident in a group home that is both licensed and run by the state. 

He said the department plans to hire a chief operating officer and an employment specialist to fill out an administrative team in the developmental disabilities unit. Those moves, he contended, will help ensure continuity as BHDDH complies with a 2014 federal consent decree. 

Another position created by BHDDH to respond to the consent decree is that of chief transformation officer. 

Reached by phone, Andrew McQuaide, the transformation officer, declined any comment on whether he will stay with the department. 

BHDDH must comply with a series of strict deadlines in the coming months to start helping more persons with intellectual or developmental disabilities find regular jobs and enjoy activities in their communities, or face possible contempt hearings in U.S. District Court over violations of the Americans With Disabilities Act. 

Title II of the ADA, reaffirmed by the 1999 Olmstead decision of the U.S. Supreme Court, is a sweeping mandate requiring states to offer services to people with intellectual or developmental disabilities in the least restrictive environment appropriate for each individual.  

The developmental disabilities division also faces scrutiny of 25 group homes that are both licensed and run by BHDDH. In addition to supervising the developmental disabilities division, Williams heads the residential unit, called Rhode Island Community Living and Supports (RICLAS.) 

A native of Connecticut, Williams had worked as head of preventive services in mental health, behavioral healthcare and developmental disabilities for the state of Missouri before coming to BHDHHD to take a similar position.  

Montanaro put Williams in charge of developmental disabilities when she became Department director, in February, 2015, but did not select a new chief for RICLAS. 

Since early April, it has become evident that Jennifer Wood, Deputy Secretary of Health and Human Services, has taken the lead on the state’s response to the consent decree, providing much of the state’s testimony during a day-long evidentiary hearing on compliance issues in U.S. District Court. 

More recently, when state Senator Louis DiPalma (D-Newport, Middletown, Tiverton and Little Compton) asked for information about BHDDH, he said he was invited to a meeting hosted by Wood; transformation officer McQuaide; the Consent Decree Coordinator, Mary Madden; and Dacia Reed, policy director of the Rhode Island Children’s Cabinet. 

Madden’s job was created at the insistence of the court monitor in the federal case as a secretary-level position with authority to enforce cooperation among three agencies responsible for compliance with the consent decree. Madden reports to the Secretary of Health and Human Services, Elizabeth Roberts, who is also head of the Children’s Cabinet, which was revived by Governor Gina Raimondo in 2015. 

The Children’s Cabinet has an interest in the consent decree because the decree is designed to protect teenagers with developmental disabilities as well as adults. Teenagers often struggle with the transition from special education in high schools to the adult system of developmental disability services. 

Asked about Wood’s future role in connection with developmental disabilities, a spokeswoman for EOHHS issued this statement today: 

“We remain fully committed to meeting the goals of the Consent Decree to provide integrated, community based services for Rhode Islanders living with developmental disabilities. Compliance with the Consent Decree has improved significantly under Director Montanaro’s tenure, and EOHHS Deputy Secretary Jennifer Wood will continue to work with Secretary Roberts and the team at BHDDH, under the leadership of Interim director Becky Boss, to ensure all requirements are met going forward. 

Additionally, Governor Raimondo has included significant funding in her proposed budget, including investments in integrated services. In the weeks ahead, Director Montanaro is committed to working with leaders in the General Assembly to secure the additional funding that Governor Raimondo has recently advocated for to provide higher-quality services for Rhode Islanders living with developmental disabilities.”

 

 

Consent Decree Task Force Session Separates "Employment First" Fact From Myth

Photo by Anne Peters

Photo by Anne Peters

Mary M. Madden, Rhode Island Consent Decree Coordinator, left; and Ray Bandusky, Executive Director of the Rhode Island Disability Law Centerm right. Madden spoke about exceptions to the consent decree "employment first" policy at a recent meeting of the Employment First Task Force.  

By Gina Macris

The 2014 consent decree designed to broaden employment opportunities for persons with developmental disabilities in Rhode Island doesn’t mean that everyone who receives adult services must work.

Yet the idea that there are no exceptions to the consent decree’s “employment first” philosophy has grown into a myth, resulting in considerable confusion and anxiety about the impact of the agreement on those who might not be suited for supported employment in the community.

The issue surfaced in several public forums in the past few months.

For example, in early April, state lawmakers heard from one of their colleagues about a man whose medical records listed 17 surgeries, and yet his family was told his support services for daytime activities would be cut off unless he looked for work.

A few weeks later, at a different forum, state officials were told about a 56-year old man who, according to his sister, doesn’t understand the concept of work. His family also was told he needed to look for work, or face loss of daytime support services.

In fact, the consent decree makes allowances for these kinds of cases. But it appears that its provisions are not well understood by the public, and in at least in some cases, by state employees assigned to help individuals with developmental disabilities and their families.

At a statewide meeting in late March, the organization Advocates in Action poked holes in several misconceptions about the consent decree with a series of wacky skits wrapped around the title “Mythbusters,” a take-off on the movie “Ghostbusters.” Advocates in Action, whose members are consumers of developmental disability services advocating for themselves, produced the show, with support from their peers and staff. The first myth they debunked was the “no-work/ no-funding” notion.

The topic of exceptions to the employment policy in consent decree came up most recently at the May 10 meeting of the Employment First Task Force at the offices of the Community Provider Network of Rhode Island (CPNRI) in Warwick.

The Task Force is a creature of the consent decree, which specifies that its membership must include representatives of consumers, families, and a variety of community organizations focused on developmental disabilities, like the Rhode Island Disability Law Center, the Sherlock Center on Disabilities at Rhode Island College, the Rhode Island Parent Information Network (RIPIN), and others..

The Task Force, whose membership does not include any representative of the state disability agency, is intended to serve as a resource for both government and the community.

At the May 10 meeting, the federal consent decree monitor, Charles Moseley, pointed out in a telephone conference call that the agreement does contain an “employment first” policy. The policy serves as the foundation for remedying Rhode Island’s violations of Title II of the Americans with Disabilities Act, (ADA), which says that disability services and supports should be applied in the least restrictive setting that is appropriate for an individual.

The policy makes “work in integrated employment settings the first and priority service option” for adults with disabilities, according to the consent decree.

That said, both Moseley and the state’s consent decree coordinator, Mary M. Madden, agreed on the exceptions to the policy.

Madden, who attended the meeting in person, elaborated. She said individuals who say they don’t want to work will be asked to first participate in trial vocational and work experiences so they can later make an “informed choice” about employment.

If they ultimately choose not to work, they must apply for a variance to the “employment first” policy, she said, but if they are of retirement age, or have health and safety issues that prevent them from looking for a job, no variance is necessary.

Claire Rosenbaum, Adult Supports Coordinator for the Sherlock Center on Disabilities, said “nobody in the community” knows what the variance process is. The notion that certain individuals would be exempt from seeking a variance “is not being communicated at all,” she said.

Madden said “lots of people have significant health concerns. They may say, ‘my goal is to maintain my health’ and consider employment in the future.”

“If you’re in crisis, you’re not thinking about a job. Without the context of that information,” she said, “just talking about the variances” isn’t useful.

Madden was asked about the criteria for determining that someone has a medical or behavioral issue exempting the individual from pursuing employment. She said she didn’t know. “That work needs to be done very soon,” she said.

It’s complicated, she said. Some people have very complex disabilities who are nevertheless working, she said, “and you don’t want to take that off the table for someone.”  

The consent decree required the court monitor and the parties to the agreement - the state and the U.S. Department of Justice - to “create a process that governs the variance process within 30 days” of the date the agreement was signed.

That signing date was April 8, 2014.  The variance process still hasn’t been hammered out completely, although Madden indicated it would be finished over the summer.

One big unanswered question is the cost of providing services that are required as part of the variance process.

The consent decree says that to be in a position to make an “informed” choice about job-hunting, someone must first participate in a vocational assessment and a sample work experience, as well as receive education and information about employment and counseling about the effect of employment on disability benefits. 

Madden, in a follow-up email, referred a reporter to Andrew McQuaide, Chief Transformation Officer at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. Efforts to reach McQuaide Thursday and Friday May 12 and 13 were unsuccessful.

The dissemination of information about the “employment first” policy, as well as exceptions to it, was to have been part of a communications plan the consent decree required to be in place by Sept. 1, 2014, but like the variance process, the communications plan has not been finalized.

The plan, still in the works, is intended to provide public education and information about the decree and connect various segments of the developmental disability community with each other.

Moseley, the monitor, must approve it, and he has been asking for progress reports, most recently in a filing with the U.S. District Court.

At the task force meeting, Madden said “there is agreement in very general terms” on the plan.

Questions of cost and sources of funding have not been resolved for the communications plan, according Sue Donovan of RIPIN, who is familiar with it.

For readers wishing additional information:

Mary M. Madden, the state’s consent decree coordinator, has offered to answer questions about the consent decree via email, at mary.madden@ohhs.ri.gov or by phone at 527-2295.

·        Here is variance language from the consent decree:

L. Any individual eligible for a Supported Employment Placement, but who makes an informed choice for placement in a facility-based work setting, group enclave, mobile work crew, time-limited work experience (internship), or facility-based day program, or other segregated setting may seek a variance allowing such placement. Variances may only be granted after an individual has:

1. Participated in at least one vocational or situational assessment, as defined in Sections II(11) and (16);

2. Completed one trial work experience, as defined in Section II(15);

3. Received the outreach, education, and support services described in Section X; and

4. Received a benefits counseling consultation, as described in Section IV(6).

M. If a variance is granted, the individual must be reassessed by a qualified professional, and the revised employment goal reevaluated, within 180 days, and annually thereafter, for the individual to have the meaningful opportunity to choose to receive Supported Employment Services in an integrated work setting. The Parties and the Monitor shall create a process that governs the variance process within 30 days of entering this Consent Decree.

N. Individuals who seek a variance from this Consent Decree, but who are unable to participate in a trial work experience, pursuant to Section V(L), due to a documented medical condition that poses an immediate and serious threat to their health or safety, or the health or safety of others, should they participate in a trial work experience, may submit documentation of such a condition to the Monitor to seek exemption from Section V(L)(2). Exemptions from trial work experiences will be subject to the Monitor’s approval.

O. The State will ensure that individuals currently in sheltered workshops who receive a variance pursuant to Section V(M) will continue to receive employment services.

The entire consent decree can be found at this link.

 

Judge in Disabilities Case to Mull Costly Sanctions Against RI

By Gina Macris

U.S. District Court Judge John J. McConnell, Jr. said May 2 he is prepared to take “swift and dramatic action” if the state of Rhode Island fails to adequately fund a 2014 consent decree intended to correct longstanding  violations of the Americans with Disabilities Act.

U.S. District Court RI

U.S. District Court RI

Nicole Kovite Zeitler, lawyer for the U.S. Department of Justice, said she plans to file a formal request  asking the judge to order the state to contribute to a “consent decree compliance fund” unless adequate funding is secured by “a date certain” through the budgetary process, now underway in the General Assembly.

Neither Zeitler nor the judge put a specific dollar amount on the cost of the consent decree, although McConnell said he wants to see the money in Governor Gina Raimondo’s budget proposal enacted “at a minimum.”

Zeitler and the state’s lawyer, Marc DeSisto, will take one week to decide whether they can jointly submit a proposed order to McConnell, according to an informal schedule the judge approved from the bench.

If the two sides cannot work together, the DOJ will draft its own proposal. McConnell will hear arguments and then make a decision. The date of the next hearing has not yet been set.

The developmental disability system in Rhode Island has been underfunded for a decade, Zeitler said.

Moreover, she said she is concerned that the cost of the consent decree is being misrepresented in budgetary discussions. 

Families fear that the state is shutting sheltered workshops and providing nothing in their place, and “we share those concerns,” she said.

Zeitler, meanwhile, said the cost of the consent decree is being characterized in budget hearings at the State House as $1.8 million, but the consent decree requires changes throughout the developmental disability system.

The sum of $1.8 million happens to be one line item in the budget of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for subsidizing one-time start-up costs incurred by direct service providers who convert to community-based services from the segregated employment and day programs that the DOJ found in violation of the ADA.

 

Impact of Budget Plan Unclear

In the next 14 months, Raimondo wants to put an additional $24.1 million into private agencies that provide most of the direct services to adults with developmental disabilities, but whether her budget actually will achieve that goal remains open to question.

The way the budget document is now written, $19.3 million of that sum would come from savings in residential costs as occupants of group homes move into less costly shared living arrangements with individual families throughout the state. The proposal counts on 100 group home residents making the transition by June 30 on a strictly voluntary basis and another 200 moving in the next fiscal year, which runs from July 1 to June 30, 2017.

In the last ten months, however, only 21 individuals have entered shared living arrangements, accounting for a projected savings of about $200,000 in the current fiscal year, according to BHDDH figures.

There are other uncertainties about the budget.

The independent monitor in the case, Charles Moseley, and the DOJ are looking for a reconfigured method of reimbursing service providers that would allow them flexibility to individualize community-based services while requiring that they meet performance targets.

The new reimbursement model would come with increased funding to the agencies, but BHDDH director Maria Montanaro told the Senate Finance Committee last week there isn’t enough money in the Governor’s budget plan to extend this methodology to all the service providers. Instead, Montanaro proposed a pilot program involving a “subset” of the service providers.

A spokeswoman for the provider agencies, Donna Martin, said she “respectfully disagreed” with Montanaro’s  approach. 

“If we target certain agencies (for pay hikes), we will not be able to recruit staff for any other program,”  said Martin, executive director of the Community Provider Network of Rhode Island (CPNRI) .

“We are facing an incredible staffing crisis,” she told the Senate Finance Committee.

 “Our staff are working minimum wage jobs. We are competing with McDonald’s” for workers, Martin said.

According to the current reimbursement rules, BHDDH pays service providers only for the time clients spend in direct contact with daytime support staff. That person-to-person interaction must be reported for each client and each worker, in 15-minute increments, throughout the day. Agencies are not paid when clients are absent, for whatever reason.

Job-scouting activities, in which a service provider might meet with a potential employer, are not part of the standard funding allocation package for individual clients.Clients who want employment supports must give up some hours in another category to get this funding. 

Until 2011, service providers received a set per-person allocation for a bundle of services that could be individualized, depending on a client’s needs.  Martin indicated that providers need a similarly flexible arrangement going forward to meet their obligations under terms of the consent decree.


Montanaro, meanwhile, said during the Senate Finance Committee meeting that a recent planning exercise came up with a $30 million price tag for applying a redesigned reimbursement model to all the service providers. She said that price tag was “impossible,” at a time when the department faced a $7 million deficit in the current budget.

Delays in Eligibility Decisions

Meanwhile, a backlog of applications for adult services that has caught the attention of the court could put additional strain on the budget that is not yet defined.

A BHDDH official told parents last week that there is a “very significant backlog” of pending applications for eligibility. At an average annual cost of $50,000 per client, an increase of 100 to the BHDDH caseload would add $5 million to the BHDDH budget.

BHDDH has been under pressure from the court to determine eligibility for young people promptly as they approach their 18th birthday, when they are defined by law as eligible for adult developmental disability services as long as they meet certain criteria.  

Since March, the Consent Decree Coordinator, Mary Madden, and other state officials have met with representatives of applicants for adult services who have experienced “inordinately long delays” in getting eligibility determinations as well as “receiving inadequate communication about the progress of their applications,” according to a report to the court submitted by the state last week.

“Those individual cases have been resolved,” the report said, but Madden told the court Monday the backlog still exists. She could not say how many applications are stuck in the pipeline.

Action Items Long Past Due

Many of the questions put to Madden and to Jennifer Wood, Deputy Secretary of the Executive Office of Human Services, had to do with pending consent decree action items that are long past due.

The state and the monitor were to have settled on a protocol for reporting compliance by Oct. 1, 2014, but it became common knowledge to dozens of individuals following the implementation of the consent decree that Moseley was having trouble getting access to BHDDH data throughout 2015.

Wood reported Monday that a confidential electronic data base allowing the monitor to track compliance according to each individual affected by the consent decree will go online in 2017, although an interim solution, in a quarterly report, will be available July 1.  

A Quality Improvement initiative was to have been launched by Nov. 1, 2014, but it is still waiting for the appointment of a quality improvement director. Funding for the position has been authorized. Each individual affected by the consent decree was to have an individual career development plan by Jan. 1 of this year, but those are not all in place.

The performance-based contracts that Montanaro said would be part of a new pilot reimbursement program with a portion of the service providers were to have been implemented system-wide by Jan. 1, 2015. 

A public education plan to explain the requirements and the philosophy of the consent decree was to have been up and running Sept. 1, 2014.

BHDDH officials submitted what they believed was the final version of the public education plan to the monitor on April 1, but Madden told the monitor Monday that “events of late have caused us to think how many more people need to be involved.”

She did not elaborate. BHDDH officials who hosted a “town hall” meeting with families and consumers in Warwick last week were met with a wave of hostile comments about the consent decree and disability services.

 

 

 

Court to Hear Evidence Friday on RI Compliance with Olmstead Decree

By Gina Macris

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

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

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

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

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

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

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

  •   Put the necessary interdepartmental leadership in place, at an annual cost of $591,244.
  •   Exceeded current targets for supported employment.
  •  Has remained “fully committed to providing sufficient funding to effectuate the goals and targets in the consent decree.” The report cites millions of dollars spent since 2014 and proposed by Governor Raimondo in budgets submitted for General Assembly approval for the remainder of this fiscal year and for the next year.

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

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

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

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

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

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

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

 

DD System Under Financial Strain

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

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

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

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

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

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

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

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

 

Consent Decree Requires its Own Budget

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

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

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

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

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

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

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

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

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

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

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

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

 

Other Consent Decree-Related Funding

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

The categories and amounts are:

  • $800,000 in each of the current and previous fiscal years for a consent decree “trust fund” to help direct service agencies with start-up costs for converting from sheltered workshop operations and segregated day programs to community-based supports.
  • $244,260 to the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and its State Employment Leadership Network (SELN) for guidance and technical assistance in transforming the state’s system of services. The SELN is a partnership between the NASDDS and Institute of Community Inclusion at the University of Massachusetts Boston.
  • ·A tripling of the ORS budget for services to individuals with developmental disabilities, from $884,370 in the first fiscal year of the consent decree (July 1, 2014 to June 30, 2015)  to a projected $2,603,374 in the next fiscal year.
  •  More than $300,000 a year, through the next fiscal year, budgeted by RIDE for personnel and contracts to help implement the consent decree, in addition to supports provided by individual school districts to transition-aged special education students.
  • A total of $591,244 for new leadership positions focused on implementation of the consent decree: a consent decree coordinator, a chief transformation specialist, an employment specialist and a program development director.

Moving to Fill Leadership Gap

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

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

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

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

 

 

Consent Decree's Community Task Force Airs Worries

By Gina Macris

Nicole Zeitler

Nicole Zeitler

While a federal judge is poised to compel the state of Rhode Island to comply with a federal consent decree intended to benefit people with developmental disabilities, the General Assembly, which holds the purse strings, does not appear to have a full understanding of the matter.

Donna Martin, executive director of a network of private disability service providers, expressed that concern March 15 at a meeting of the Employment First Task Force (EFTF), created by the 2014 consent decree to reach out to the community and to make recommendations as the state tries to implement the federal court order.

More than two dozen people, including Nicole Zeitler and Peter Stephan, lawyers for the U.S. Department of Justice, attended the task force meeting at Martin’s office at the CommunityProvider Network of Rhode Island (CPNRI) on Jefferson Boulevard in Warwick. The task force is chaired by Kevin Nerney, assistant director of the Rhode Island Developmental Disabilities Council.

The two DOJ lawyers had appeared at a hearing in Providence the previous day before U.S. District Court Judge John J. McConnell, who displayed a growing impatience with the state’s piecemeal compliance and affirmed a schedule for considering remedial action in April. 

Martin said, “I’m concerned about what’s going to happen after the evidentiary hearing and how the executive branch moves from the fallout of that without the full understanding of the legislature.“

McConnell is to hear evidence on compliance April 8 to help him shape a new court order for a remedial action plan.

“It concerns me that the consent decree is silent” on funding, Martin said. “That puts the onus on the advocacy community. The burden the developmental disability community is facing far predates the consent decree,” she said. “When the dollars are not appropriated, our hands are essentially tied.”

Martin was alluding to a 13 percent cut in the developmental disabilities budget the General Assembly made in the early hours of the morning on the last day of the 2011 session. The budget has not recovered the lost funding, while the caseload has grown in the last five years.

“While I understand that there are separate branches of government, I’m concerned that there is not a stronger coordinated voice with the legislature,” Martin said. 

Ray Bandusky, executive director of the Rhode Island Disability Law Center, said, “I think it’s important to emphasize that the overwhelming majority of legislators abhor consent decrees. I don’t see it being a big motivator.” 

The DOJ’s Zeitler said that “the consent decree doesn’t specify how it is to be funded,” but it does say that it will be “fully funded.”  The agreement was signed in 2014 by former Governor Lincoln Chafee and DOJ officials. 

In January, state officials acknowledged that the budget does not now contain enough money to implement the court order.

Zeitler said that the state promised McConnell it would show him budget numbers that are linked to compliance results for specific individuals affected by the consent decree. “We didn’t come up with that out of nowhere; It came from the consent decree,” Zeitler said.

 “We are waiting for a usable summary” of Governor Gina Raimondo’s proposed new budget; something that goes beyond the executive summary she included in her budget message to the General Assembly in early February, she said. 

The consent decree says funding is supposed to be built around the needs of the individual. In that context, Zeitler said it is “helpful to hear” from consumers who might say, “I ended up getting my tier (funding level) changed and it didn’t have anything to do with my needs.”

In between their appearances in court and at the public EFTF meeting, Zeitler and Stephan have met privately with people receiving services and with family members.

 

Funding hinders individualized services

The current funding structure hinders the community integration and personal choice that is at the center of the consent decree, because it is driven by ratios and has no flexibility to accommodate people’s needs,  Martin said.

To illustrate her point, Martin gave a hypothetical example of a day facility with a staff-to-client ratio of 1 to 8. If one staff member accompanies a person with a disability somewhere, that leaves another staff member with a double ratio of clients, Martin said. .

In other words, one person’s integration comes at the expense of another’s need for staff attention.

One parent said pressure from the consent decree to close segregated day facilities like the one in Martin’s example is resulting in groups of people with disabilities riding around in a van or car when one of them has to go somewhere.

“The day center has become mobile,” said Mary Beth Cournoyer.

“It looks like we’re following a path (toward community integration) on paper, but we don’t get there,” Cournoyer said.

She also indicated that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) continues to determine an individual’s funding level through an assessment that was never designed for that purpose.

The consent decree specifically prohibits the state from using the assessment, called the Supports Intensity Scale, as a funding tool. 

Cournoyer said it would be “enormously helpful  to identify the roles and responsibilities of the task force.” 

The group, hampered by fragmented communication from state agencies and a lack of data needed to formulate policy recommendations, has struggled to define its role over the last two years.

Cournoyer said individuals with disabilities either are not being informed or are misinformed about changes that affect them. “Parents are screaming that they are going to take the money away,” she said.

Zeitler said, “There are amazing people in this room. I have heard all of you talk. I have every belief you can use the power you have.”

The consent decree says the Employment First Task Force “should include certain people, and more than half of you are advocates and parents,” Zeitler said, scanning the room. “Our position is that the state should be taking information from the task force and using it to change systems,” she said. 

 

Coordinator Introduced

The group welcomed Mary Madden, the interim consent decree coordinator, who spoke about her approach to the newly created secretary-level position.  

Madden, with 30 years’ professional experience in developmental disabilities in Rhode Island, has become widely respected in that field.

She said that while she will work toward the compliance goals spelled out in the consent decree, “the greater goal we should care about is inclusive lives for people in the community.”

She said she hopes to bring people from various departments of state government together“to work seamlessly as a team.”

The DOJ and the court monitor have argued that the consent decree calls for a coordinator with the clout to require cooperation from department heads.

Martin of CPNRI said her organization is pleased that the coordinator’s position has been moved outside any department of state government. “It’s difficult to effect change in departments that continue to be very siloed” when the coordinator’s position remains within one department, she said.

Before Madden’s appointment, the coordinator’s position was assigned to BHDDH. The former coordinator, Andrew McQuaide, now serves as Chief Transformation officer at BHDDH.

Madden said, “I want to do a job that matters and has impact. I’m an action-oriented person. I’ve never worked for state government; just the private sector. When something needs to get done, you just do it,” she said.

Even so, Madden said, she is sure she will encounter bureaucratic situations.  She also said “there are a lot of things about this position that are unknown and haven’t been hammered out.”