RI Senate Finance, BHDDH To Seek More Funding To Protect Services And Rights Of Adults with DD

By Gina Macris

Governor Gina Raimondo’s proposed $18.4 million cut to developmental disability services for the next fiscal year would not allow Rhode Island to continue its compliance efforts in connection with a 2014 federal consent decree, Rebecca Boss acknowledged for the first time during a budget hearing before the Senate Finance Committee on May 3.  

Boss - RI CApitol tv

Boss is the highest ranking official in the Raimondo administration responsible for adults with developmental disabilities in her position as the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Her admission came in response to the finance committee chairman, Sen. William J. Conley, Jr., who laid out a detailed and persistent line of questioning that revealed an authoritative grasp of the issues of the the consent decree and established him as a leading advocate for expanding the developmental disabilities budget.  

Boss said in initial remarks that based on an “updated data analysis of monthly caseloads and more positive revenue trends, we will be advocating for increased funding for BHDDH so Rhode Islanders’ needs are met.”

Conley - RI CAPITOL TV 

But Conley asked her to revisit a specific question about funding that had first been posed to her by U.S. District Court Judge John J. McConnell, Jr. during a hearing April 10. McConnell asked whether the proposed $18.4 million cut in reimbursements to private providers effective July 1 would affect the state’s ability to move forward with compliance efforts related to the consent decree.

At the time, Boss said BHDDH did not have enough data to give an answer.

Conley said the consent decree “does nothing more, quite frankly, than require the same standards that the U.S. Supreme Court established in 1999.”

The so-called Olmstead decision clarified the integration mandate of the Americans With Disabilities Act, spelling out the rights of all individuals with disabilities to choose services that are part of their communities.    

Nearly 20 years after the Olmstead decision, Rhode Island is “still struggling to meet a constitutional standard of care,” Conley said.

“Four years after the consent decree was entered and after repeated court monitor reports, we still cannot answer the question as to whether or not we are providing sufficient resources, really, to provide justice and dignity to the people with intellectual and developmental disabilities in the state of Rhode Island.”

“While I understand you have to represent the voice of the administration, and everybody expects you to be a loyal soldier and team player, the budget that you are giving us doesn’t do that,” Conley said, addressing Boss.

Otherwise, Boss would have been able to clearly answer the judge that the loss of $18 million would not affect progress on the consent decree and would have been able to spell out how its goals would be achieved with the remaining funds, Conley said.

When Conley asked what the Senate Finance Committee could do to help BHDDH, Boss and the Director of Developmental Disabilities, Kerri Zanchi, both said members could advocate for more flexibility for the department to assign resources.

Boss said she agreed that the department needs more resources but wasn’t sure that the prescriptive nature of the consent decree was the best approach.

But Conley replied said that when the state isn’t meeting the standards, or doesn’t have the data to show its progress – a problem since 2014 – “the default position is prescriptive standards, because they need some kind of measuring stick.”

One measure is whether the “proposed budget would provide the level of services that are constitutionally mandated,” Conley said.

“What’s your answer today?” he asked, bringing the discussion full circle back to the judge’s question.  

Boss said, “With the revised analytics done, we could say today that the budget proposed would not continue the service delivery” in the current fiscal year.  The consent decree requires an increase in commitment during each year of implementation. equired by the consent decree.

While Boss did not offer a figure, Sen. Louis D. DiPalma, D-Middletown, the first vice-chairman of the committee, said developmental disabilities would need about $275 million to $280 million in federal and state funding during the next fiscal year, based on the original budget request the department made to the Governor’s office last fall.

DiPalma presented a chart showing that actual funding for developmental disabilities has lagged behind inflation since July 1, 2011, which marked the introduction of “Project Sustainability,” the current fee-for service reimbursement system that has come under increasing criticism for imposing restrictions on providers – and the state bureaucracy – in implementing the consent decree.

For example, the chart shows that the $239.8 million allocated for developmental disabilities effective July 1, 2010 would be the equivalent of $274.5 million allocated effective July 1, 2018, the start of the next fiscal year, with an adjustment for inflation according to the consumer price index.

Raimondo’s proposal, as it now stands, would allocate only $248.1 million effective July 1, counting only the federal-state Medicaid funding. (Other miscellaneous funds would add slightly more than $2 million to the bottom line.)

The Senate on May 1 gave final approval to a resolution creating a special commission to study the reimbursement system under Project Sustainability, including the use of a standardized assessment tool keyed to a funding formula that has never been disclosed. The commission has until March 1, 2019 to issue its report.

Sen. Walter S. Felag, Jr., D-Warren, Bristol and Tiverton, said he favors fully funding developmental disabilities.

He said it seems that in the last eight to ten years, there has been “tremendous pressure” to decrease these expenditures,” with particular challenges on residential costs from 2013 to 2017 as BHDDH has tried to move people out of group homes to less expensive shared living arrangements.  He questioned whether it has been all worthwhile.

Boss said there have been investments in developmental disabilities in that time, and Conley remarked that Boss and her staff are doing “tremendous work” with the resources they do have.

Beth Upham put a parent’s perspective on services. Her daughter, Stacy, a resident of a group home with an active calendar, “has a life we never could have given her,” she said.

She said she has met with Governor Raimondo, who has “promised she would support this community.”

But if the governor’s existing budget proposal is enacted, Upham said, “every person in the system will suffer. They will be sicker. There will be more hospitalizations. My daughter, my baby girl, will suffer,” Upham said.

“We have been fighting this system ever since she turned 21,” Upham said.

She asked, “why, for the last 15 years, has this community been targeted for cuts?”

RI Revises Supported Employment; Providers And Families Invited To Information Sessions

By Gina Macris

The second year of a program to help Rhode Islanders with developmental disabilities find jobs will offer extra bonus money to encourage financially strapped private agencies to seek new clients, particularly young adults.

Zanchi     Photo by Anne Peters  

The state began the “performance-based” program last January to avoid federal court sanctions for failing to implement a 2014 consent decree aimed at giving individuals with disabilities greater access to regular jobs and integrated non-work activities.

“We’ve learned a lot in this first year,” said Kerri Zanchi, Director of the Division of Developmental Disabilities (DDD). Zanchi, the first developmental disabilities professional to head DDD in at least a decade, began work in Rhode Island shortly after the supported employment program kicked off a year ago.

Zanchi elaborated on the status of the program, in which private agencies provide supportive job-seeking and job-retention services, during a telephone interview Jan. 5.

She said that in the initial contract year, which ended in December, 22 private agencies offered supported employment services to about 440 adults with developmental disabilities, with about 150 gaining employment at minimum wage or higher.

In the coming year, Zanchi said, she hopes the opportunities for enhanced performance payments and other changes prove “more responsive to the needs of consumers” and that the number of providers will expand. 

DDD will host information sessions Monday, Jan. 8 and Friday, Jan. 19 for private providers seeking to renew their contracts or establish new ones and for so-called “self-directed” families, who take on the design and direct supervision of a loved one’s activities. Few of these families have been able to participate in the performance-based program during its first year, according to anecdotal reports. 

A key addition to the menu of performance payments to providers is a bonus of $600 for each new client who signs on for employment-related services, or $1,000 for young adults who left high school between 2013 and 2016. These bonuses are due once the new client has received 20 hours of employment-related supports.

The consent decree places particular emphasis on young adults with intellectual or developmental disabilities, because investigators for the U.S. Department of Justice believed they are at heightened risk for isolation and segregation as they move from high school to adult services.

The consent decree draws its authority from the Olmstead decision of the U.S. Supreme Court, which reinforces the mandate for integrated services in the Americans With Disabilities Act

The young adult group also is the only segment of the consent decree population – more than 3,000 individuals altogether –for which the state is significantly out of compliance with court approved targets for job placement.

A reluctance among established agencies to expand their client roster has resulted in limited choices for the families of young adults; prompting them to direct their own services. But that choice also has made it generally more difficult to access the supported employment program, according to various reports about families’ experiences during the first year of the program.

Providers have told state officials that in many cases they can’t take on new clients because of low reimbursement rates and high staff turnover, and because the bonuses of the initial cycle of the supported employment program did not pay for the costs both of training new workers, as well as providing the actual services.

The graduation rate for a tuition-free training program offered by the Sherlock Center on Disabilities at Rhode Island College is 40 percent, with students dropping out for a variety of reasons, most of them related to high turnover and short-staffing at the provider agencies.  

In the second year, providers can expect an increase of $460 for training each new job coach, from $350 to $810 per trainee, according to materials from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which were released by Zanchi.

The information sessions will be at the Arnold Conference Center in the Reagan Building of the Eleanor Slater Hospital, 111 Howard Ave., Cranston, Monday, Jan. 8, from 2 to 4 p.m. and Friday, Jan. 19, from 9 to 11 a.m.

In 2016, just after a U.S. District Court judge ordered the state to come up with a new “reimbursement model” that would give adults with developmental disabilities access to regular jobs. Shortly after that, the General Assembly allocated $6.8 million in state funds to finance what became the performance-based supported employment program.

Besides the bonuses, the revised program includes increased allocations – a total of $8,000 a year per client, according to the latest BHDDH figures – for provider reimbursements for employment services.

Zanchi said that the original $6.8 million allocation will continue to fund the first six months of the second year of the performance-based program until June 30, when BHDDH expects to return an estimated $2 million to the state.

The return of the estimated $2 million in unused supported employment funds was part of a deficit reduction plan outlined by BHDDH director Rebecca Boss Nov. 30 to close an estimated $15.9 millionf departmental deficit, including $12 million in developmental disabilities.. But it is well-understood within BHDDH that from a fiscal perspective, supported employment must continue because it is a court-ordered service.  

BHDDH has requested new funding, with projected utilization based on the first full year of programmatic experience, for the state’s next fiscal year beginning July 1, Zanchi said.

She did not say how much BHDDH  will seek for supported employment. Governor Gina Raimondo is expected to submit her budget to the General Assembly later this month.

RI DD Officials "Trying To Do The Right Thing," Says Judge In Review of 2014 Olmstead Consent Decree

By Gina Macris

Rhode Island’s efforts to implement a 2014 consent decree to help adults with developmental disabilities become part of their communities won plaudits from a federal judge July 28, althougth some officials indicated there’s still a long way before the changes permeate the system of state services. 

Judge John J. McConnell, Jr. said he is heartened “when a state entity is trying to do the right thing. It’s not the case where the state is acting in any way in bad faith.”

“Compared to about a year ago we are in a very different place,” he said.

In May, 2016, McConnell issued a 8-page order warning the state he would entertain contempt proceedings unless it moved forward with implementation of the consent decree, which at that time had been stalled for two years.

At the latest hearing, July 28, McConnell said there had been “positive movement” in the state’s efforts to carry out the requirements of the consent decree and urged state officials to “keep it up.” 

The judge acknowledged that sweeping changes in the leadership of state agencies responsible for the disabilities programs in recent months had left him feeling “quite nervous” about the state’s ability to comply with his orders, but he said “now it doesn’t feel that way at all.”

McConnell chose a relatively informal setting for the hearing, convening his review not in his courtroom but in the richly paneled library of the Beaux Arts federal building on Kennedy Plaza in Providence, and inviting participants around a conference table to remove their jackets.

A lawyer for the U.S. Department of Justice, Nicole Kovite Zeitler, and an independent court monitor, Charles Moseley, cited advances in the handling of bureaucratic issues that are pre-requisites for a turn-around in the system that will take years to accomplish. The areas they covered included:

• The realignment of social work staff to better oversee changes in the way services are delivered
• Additional steps intended to lay the foundation for an active, multi-faceted quality improvement effort involving the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Office of Rehabilitation Services (ORS)
• Improved communication with service providers, and with the publicThe expanded availability of training and information on the principles of individualized planning and personal choice that are at the heart of the consent decree – and the federal law behind it.

There were, however, signs that, for some individuals who depend on developmental disability services, change has not yet arrived.

For example, Zeitler said that of 22 private agencies participating in a pilot program to encourage job-placements, 42 percent –nearly half - say they can’t take new clients.

Moseley said he “regularly” gets reports from families who say that they have been turned down by service providers they sought out.

Although the pilot project in supported employment is billed as an “incentive” program, participating agencies report privately they operate at a loss for each client they place in a job.

The legislature allocated $6.8 million for supported employment in the fiscal year which ended June 30, but the pilot program did not begin operations until January, and in the first six months it paid out a total of about $122,000 to participating agencies, according to BHDDH calculations obtained by Developmental Disability News.

Rebecca Boss, the BHDDH director, acknowledged there are “challenges” to delivering those supported employment services but did not elaborate. A report from Moseley to the judge submitted the day before the hearing said there have been multiple meetings between state officials and the providers to discuss various factors affecting the supported employment program, including “operational issues that are reported to be impeding the ability of the organizations to meet their placement goals.”

McConnelland the consent decree officials at the table spent considerable time discussing a relatively low employment rate of young adults – the very group most likely to have had the broadest experiences in high school, including school-to work internships. 

The participants acknowledged that the employment rate for that group, 32 percent, was artificially depressed, because the number of individuals in the young adult category has grown dramatically, from 151 to 497, in the last nine months.  It takes time to find the right job, Zeitler said. 

But the monitor said in his latest report to the judge that progress in finding jobs for young adults “has been slow.”  Even if one analyzes only the original 151 young adults and discounts 60 of them who are not receiving BHDDH services, the employment rate is 51 percent, Moseley said in the report.

He recommended that the state contact each of the 60 not receiving services to make sure they know that supports are available if they need them.

Clients recently interviewed by Zeitler and DOJ colleagues said they were sometimes “bored” with their daytime non-work activities, Zeitler reported. The Americans With Disabilities Act (ADA) says persons who receive public supports must have personal choice in deciding what they do with their time, both for work and leisure.

But the way resources are currently invested does not necessarily promote “inclusivity,” noted Boss, saying the department is hoping to do some “rebalancing” of the way money is spent.

The individual choice mandated in the consent decree implies one-to-one or small group staffing, assuming that a few friends want to do something together in the community. But a fairly rigid regulatory structure currently in place doesn’t allow for such staffing unless clients are deemed to have extensive disabilities.  

The Division of Developmental l Disabilities is in the process of rewriting all its regulations to change from a system that assigns funding based on the severity of a disability to one that stresses individualization and personal choice, or“person-centered planning,” in accordance with the ADA and the consent decree.

As Moseley noted, the state must make these changes anyway to comply with the broader federal Medicaid Home and Community Based Rule (HCBS). The federal-state Medicaid program pays for all developmental disability services in Rhode Island.

Like the consent decree, HCBS derives its authority from the 1999 Olmstead decision of the U.S. Supreme Court. The Olmstead decision re-affirmed Title II of the ADA, which emphasizes its primary purpose to integrate those with disabilities into the mainstream of society and respects their individual choices on the degree to which they wish to participate. 

The last time BHDDH attempted regulatory reform along similar lines, in 2015, an internal BHDDH work group came up with recommendations that would have cost tens of millions of dollars. The proposed changes did not move forward.  

In his most recent report to the judge,  Moseley said that the effort to gain greater flexibility over existing funding “is a positive move, but additional steps need to be taken to map out a process for ensuring that funding supports integrated person-centered day services” that meet the standards of the consent decree.

Zeitler said management officials of direct service agencies seem to understand the principles of individualized, or “person-centered” activity plans, but some direct care workers “don’t speak the language.” 

Zeitler suggested that more training is in order.  Although the training is available, tuition-free, Kerri Zanchi, developmental disabilities chief at BHDDH,  indicated there was no “quick fix” to this problem, given the high turnover in the workforce.

Zeitler, meanwhile, praised the way Zanchi has moved around staff to make the most of available personnel, calling the reorganization “very creative.”  

Zanchi has added four workers to the case management unit, reducing caseloads from 205 to 152 per person. Two of the workers came from the unit that determines eligibility for services and two came from a separate group that assesses the support needs of clients once they are found eligible for services. 

Another worker has been tapped to serve in the newly created position of transition coordinator, to serve teenagers and young adults moving from high school to adult services. The Division of Developmental Disabilities has hired a new residential coordinator to address housing options for those who do not live with their families.

An outside quality improvement expert enlisted by Moseley has said in a report that "there is a significant commitment to change" at BHDDH and ORS to ensure high program standards are implemented across the board. 

"But the staff available to implement change are stretched very thin," wrote Gail Grossman in a report that is part of Moseley's latest filing with the court. Grossman continued: "Serious consideration needs to be given to the need for additional staff resources if DDD (the Division of Developmental Disabilities) and BHDDH are going to develop, manage and oversee a strong QMIS (Quality Management and Improvement System) structure."

BHDDH has a unit entitled quality improvement, but its scope is limited to investigations of neglect or abuse of vulnerable individuals.

Click here for the monitor's latest report to the judge.

Related articles: Judge Willing To Intervene In RI Budget Impasse

Supported Employment Program Falls Short Of Initial Goals in RI

Four Years After Settlement, Former Workshop Still Segregates Adults With DD - Monitor

photo by gina macris

Former Training Through Placement building at 20 Marblehead Ave., North Providence RI

By Gina Macris

A federal judge has taken the state of Rhode Island to task for failing to keep track of a former sheltered workshop that has continued to segregate adults with developmental disabilities, despite a landmark integration agreement four years ago that seeks to transform daytime services for those with intellectual challenges.

An order by Judge John J. McConnell, Jr. of U.S. District Court sets strict deadlines between the end of June and the end of July for specific steps the state must take to ensure that all clients of the former sheltered workshop lacking jobs or meaningful activities begin to realize the promise of the 2013 agreement.

The so-called Interim Settlement Agreement of 2013 focused primarily on special education students at the Birch Academy at Mount Pleasant High School and adult workers at Training Through Placement (TTP), which has become Community Work Services (CWS.)

The former sheltered workshop used Birch as a feeder program for employees, who often were stuck for decades performing repetitive tasks at sub-minimum wages – even when they asked for other kinds of jobs. Involved are a total of 126 individuals, according to McConnell’s count.

In 2014, after a broader investigation by the U.S. Department of Justice, the state signed a more extensive consent decree covering more than 3,000 adults and teenagers with developmental disabilities. The state promised to end an over-reliance on sheltered workshops throughout Rhode Island and instead agreed to transform its system over ten years to offer individualized supports intended to integrate adults facing intellectual challenges in their communities.

Together, the companion agreements made national headlines as the first in the nation that called for integration of daytime supports for individuals with disabilities, in accordance with the Olmstead decision of the U.S. Supreme Court. The Olmstead decision re-affirmed Title II of the Americans With Disabilities Act, which says services must be provided in the least restrictive setting which is therapeutically appropriate, and that setting is presumed to be the community.

McConnell’s order is the latest and most forceful development in a story that highlights not only the failings of the former sheltered workshop, Training Through Placement (TTP), but the state’s lack of a comprehensive quality assurance program for developmental disability services system-wide.

The former sheltered workshop run by CWS at 20 Marblehead Ave., North Providence, was closed by the state on March 16 on an emergency basis because of an inspection that showed deteriorating physical conditions. Individuals with developmental disabilities were “exposed to wires, walkways obstructed by buckets collecting leaking water, and lighting outages due to water damage,” according to a report to the judge. At that point, CWS had been working under state BHDDH oversight for about a year, because of programmatic deficiencies, according to documents filed with the federal court.

CWS is a program of Fedcap Rehabilitation Services of New York, which had been hired by then-BHDDH director Craig Stenning to lead the way on integrated services for adults with developmental disabilities at TTP in the wake of the 2013 Interim Settlement Agreement. Stenning now works for Fedcap.

With the CWS facility closed by the state, the program resumed operations on March 21 in space provided by the John E. Fogarty Center in North Providence under terms of a  probationary, or conditional, license with state oversight, according to a report of an independent federal court monitor overseeing implementation of  the 2013 and 2014 civil rights agreements in Rhode Island that affect adults with developmental disabilities.

The monitor said the state licensing administrator for private developmental disability agencies also notified the CWS Board of Directors and the Fedcap CEO of the situation, making these points:  

• the state was concerned about unhealthy conditions of the CWS facility
• ·the agency failed to notify the state of the problems with the building
• CWS failed to implement a disaster plan
• ·The CWS executive director had an “inadequate response” to the state’s findings.

The letter to the Fedcap CEO also said that CWS had been providing “segregated, center-based day services” rather than the community-based programming for which the agency had been licensed.

Summarizing the status of the 2013 Interim Settlement Agreement, the monitor, Charles Moseley, concluded in part that the Providence School Department and the Rhode Island Department of Education have continued to improve compliance through added funding, an emphasis on supported employment, staff training and data gathering and reporting.

Overall, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) the Executive Office of Health and Human Services, (EOHHS) and the state Office of Rehabilitation Services (ORS) also have made progress, Moseley said, citing budget increases, new management positions, and programmatic changes he has mentioned in various status reports on the statewide consent decree.

However, progress for clients of the former TTP workshop “appears to have plateaued and possibly regressed,” Moseley wrote, and for that he faulted the successor agency, CWS, and the lack of sustained oversight on the part of BHDDH. 

While some former sheltered workshop employees at TTP did find work after the Interim Settlement Agreement was signed in 2013, “the number and percentage of integrated supported employment placements has remained essentially flat for the last four years,” he said.

Efforts to reach CWS and Fedcap officials were unsuccessful.

In mid-March, CWS  reported that 30 of 71 clients on its roster had jobs. Of the 30 who were employed, 13 with part-time jobs also attended non-work activities sponsored by the agency. In addition, 41 clients attended only the non-work activities.

In early April, Moseley and lawyers from the DOJ interviewed the leadership and staff of CWS and some of the agency’s clients in their temporary base of operations at the Fogarty Center. Serena Powell, the CWS executive director, was among those who attended, Moseley said.

The leadership “revealed a lack of understanding of the basic goals and provisions of the state’s Employment First policy and related practices,” Moseley said in his report.

Rhode Island has adopted a policy of the U.S. Department of Labor which presumes that everyone, even those with significant disabilities, is capable of working along non-disabled peers and enjoying life in the community, as long as each person has the proper supports.

“This lack of knowledge and understanding appeared to extend to the basic concepts of person-centered planning (individualization) and program operation,” Moseley said, citing the names of specific protocols used by state developmental disability systems and provider agencies “across the country.”

Moseley said some CWS staff do not have the required training to do their jobs.

Some job exploration activities have consisted of “little more than walking through various business establishments at a local mall,” Moseley said, explaining that they were not purposeful activities tailored to individual interests and needs.

Moseley said he interviewed three clients of CWS and they were “unanimous in their desire to have a ‘real job’ in the community and to be engaged in productive community activities that didn’t involve hanging out with staff at the mall.

“All three persons reported that they were pleased to be out of the CWS/TTP facility and to have opportunities to go into the community more often. Two of the three expressed an interest in receiving services from a different service provider,” Moseley said.

The state has had four years to work on compliance with the Interim Settlement Agreement and the Consent Decree. During that time, BHDDH has seen three directors and its Division of Developmental Disabilites (DDD) has had four directors, including an outside consultant who served on an interim basis part of the time officials conducted a search that led to the appointment of Kerri Zanchi in January.

Between mid-February and early May, there was a separate upheaval in the leadership of the Executive Office of Health and Human Services, which had taken charge of the state’s compliance efforts in connection with the 2013 and 2014 civil rights agreements.

In a statement to the court, Zanchi alluded to all the turnover, saying that “progress has been challenged due to changes in internal and external leadership impacting stability, communication, resources, accountability, and vision.” 

Zanchi suggested that budget increases and considerable effort among BHDDH and ORS staff during the last year to improve compliance nevertheless have not been enough to make up for the previous three years of inaction.

Among other things, there is no consensus across the network of private service providers – some three dozen in all – “regarding the definition and expectation of integration,” Zanchi said.

DDD is responding by establishing “clear standards, training and monitoring,” she said. McConnell’s order required DDD to complete “guidance and standards for integrated day service” by June 30 and allowed another month for the document to be reviewed and disseminated to providers.

Zanchi said the state now has an “extensive quality management oversight plan” with CWS that involves DDD social workers, who are actively supporting CWS clients and their families. These same social workers also have average caseloads of 205 clients per person, according to the most recent DDD statistics.

Zanchi agreed with Moseley, the court monitor, that “current review and monitoring does not constitute a fully functioning quality improvement program.”

Moseley said that DDD’s quality improvement efforts “are seriously hampered by the lack of sufficient staff.” He called for “additional staffing resources” to ensure quality, provide system oversight and improve and ensure that providers get the required training.

Zanchi said an outside expert in interagency quality improvement is working with the state to develop and implement such a fully functioning plan. McConnell gave the state until July 30 to have a “fully-developed interim and long-term quality improvement plan” ready to go.

Of the 126 teenagers and adults McConnell said are protected by the 2013 Interim Settlement Agreement, 46 need individualized follow-up. Of the 46, 34 have never been employed, including 24 former TTP workers and 10 current Birch students or graduates.

The judge reinforced the monitor’s repeated emphasis over the last two years on proper planning as the foundation for producing a schedule of short-term activities and long-term goals that are purposeful for each person, whether they pertain to jobs, non-work activities, or both.  

These planning exercises, led by specially trained facilitators, can take on a festive air, with friends and family invited to share their reminiscences and thoughts for the future as they support the individual at the center of the event.

McConnell’s order said the state must ensure that “quality” planning for careers and non-work activities is in place by July 30 for active members of the protected class who want to continue receiving services.

Among CWS clients, the agency reported that 10 have indicated a reluctance to go into the community, perhaps because they feel challenged by the circumstances.

Moseley cited a variance to the Employment First policy developed by the state to cover those who can’t or don’t want to work, for medical or other reasons. Moseley’s report said he approved the variance in 2015, but it hasn’t been implemented. He acknowledged that it was difficult to understand.

McConnell’s highly technical and detailed order requires the state to implement a “variance and retirement policy” by June 30 “to discern specifically those who do not identify with either current or long-term employment goals.” 

McConnell also ordered the state to fund an additional $50,000 worth of training from the Sherlock Center on Disabilities at Rhode Island College so that those who work with adults with developmental disabilities can give them individualized counseling about how work would affect their government benefits.

The monitor has repeatedly cited a dearth of individualized benefits counseling. In his latest report, he wrote that in interviews May 11 and May 12, high school students at Birch, their parents, staff, and others expressed the false conviction that students could work no more than 20 to 25 hours a week without compromising their benefits.

"This finding underscores the importance of individualized benefits planning for this population to ensure that students are able to take full advantage of Social Security Act work incentives that may enable them to work more than 25 hours per week while maintaining their public and employer benefits," Moseley said.

The monitor is expected to evaluate compliance with the deadlines in McConnell's latest order in a future status report.

Gallivan's Short Stint in RI Brings Plenty of Change, Starting with Plans for Better DD Assessment

Jane Gallivan   Photo by Anne Peters

By Gina Macris

In just the few months she has served as interim director of Rhode Island’s Division of Developmental Disabilities, Jane Gallivan has been instrumental in changing the state’s approach to providing services for individuals with intellectual challenges.

On the most concrete level, she has set plans in motion to adopt an improved version of a controversial assessment – the Supports Intensity Scale (SIS) – to more accurately determine the needs of clients.

With help from the Executive Office of Health and Human Services, Gallivan also has shifted strategies for presenting the division’s budget so that the state Budget Office and the General Assembly better understand what it means to support individuals with developmental disabilities.

The initiatives Gallivan has begun, and the tone she has set, are expected to continue after her role changes Friday, Sept. 30, to that of long-distance consultant.

Gallivan, 68, is taking her 101 year-old mother to Florida for the winter, a commitment she made before Rhode Island officials approached her for short-term help in leading the developmental disabilities division.

She will continue to monitor and guide reforms and will serve on the committee that will screen applicants for the division’s permanent chief.

A former state-level director in Maine and Delaware, Gallivan already has been spreading the word about the director’s job through her nationwide contacts in the field of developmental disabilities.

As she prepared to end her full-time role in Rhode Island, Gallivan shared her perspective on the future of developmental disability services in Rhode Island.

Major Changes Coming to Every State

Gallivan says all state developmental disability service systems are in the midst of a sea change because of sweeping new Medicaid regulations.

The rules say that all services for the elderly and individuals with all types of disabilities must be provided in the least restrictive setting that is therapeutically appropriate, which is presumed to be the community.

After March, 2019, Gallivan said, Medicaid will no longer pay for sheltered workshops or segregated day programs after March, 2019.  Sheltered workshops don’t fit the Medicaid’s definition of “community,” she said.

Federal Medicaid dollars pay for half the cost Rhode Island’s developmental disability services.

The federal consent decree requiring Rhode Island to shift to community-based jobs and activities may put the state ahead of the curve, she said.

Both the consent decree in Rhode Island and the changed Medicaid regulations nationwide get their authority from the 1999 Olmstead decision of the U.S. Supreme Court, which is in effect a desegregation order for individuals protected by the Americans with Disabilities Act. 

Individuals and families who struggle to find appropriate services may not yet see any change in their lives.

Gallivan says she worries about a caseload ratio that is “way too high” - one social worker to every 205 clients.

Social workers are “really concerned about helping people out,” she said, “but like any other service system, they are often, because of the ratios, dealing more with people in crisis”  or those just entering the system, rather than “supporting the people who are not the squeaky wheel.”

“No one wants to expand state government,” but state government must still “figure out how we’re going to put more resources into case management,” Gallivan said.

A New Way to Assess Service Needs

Since taking the interim director’s job in July, Gallivan has been “looking under the hood,” as she put it, to understand the barriers that need to be removed to allow “people to really get out and enjoy activities in the community, to get better connected, to explore new job options and so forth.”

She’s been searching for hindrances in state regulations, the way programs are funded, and the way clients have been assigned individual funding based on “tiers,” or levels of need.

The Supports Intensity Scale, (SIS) is a lengthy questionnaire used since 2011 to determine the individual level of funding according to “tiers” labeled A through E, with E being the costliest.

In the last few years, the SIS been the single most emotional flashpoint for families, many of whom have complained bitterly not only about results that yield insufficient funding, but that interviewers argued with them or recorded answers different than the ones they gave.

In the next several months, Gallivan said, the state will move to what she hopes will be a more accurate version of the assessment, with additional questions focusing on medical and behavioral needs.

SIS Interviewers will be retrained in the new version by representatives of the organization which developed the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD).

Gallivan said training also will be offered to family members and representatives of service provider agencies, who attend the interviews and help answer questions.

The state will monitor the new approach to determine whether it leads to a reduction of a high number of exceptions now granted to the assessment results. 

The exceptions, in which a client may have more funding than warranted by the official level of support, have raised numerous questions in the General Assembly about how the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) manages its budget. 

Gallivan offered some background on the SIS, which is used in Rhode Island as a basic building block of the developmental disability budget.

On its face, the SIS is a better assessment than some others in use across the country because it frames questions in terms of an individual’s strengths and the supports he or she may need to achieve a particular goal, rather than focusing on deficits, Gallivan said.

But it has its limitations, she readily acknowledged. It is recognized nationwide that the SIS does not address extensive medical needs or behavioral issues, Gallivan said.

“You also have to be sensitive to people who are very independent, but they may get themselves into trouble with the law,” or in some other way, because of their disabilities, she said.  For example, some individuals may appear independent, but if they don’t have the proper support and guidance, they may end up at a homeless shelter, or picked up by police for shoplifting.

The SIS was developed as a tool for planning individualized programs of support, not as a funding mechanism, although many states use it for budgeting, Gallivan said..

As a result of the gaps inherent in the original assessment, the state of Oregon developed a number of questions on behavioral and medical support needs that were tried out by other states and ultimately incorporated into a new version of the questionnaire called the SIS-A, Gallivan said.

“Everyone came to the conclusion that these supplemental questions really did add a more robust, accurate assessment,” she said.

AAIDD released the SIS-A in 2015, according to the organization’s website.

Gallivan said arrangements are being made for AAIDD representatives to come to Rhode Island for training in the SIS-A. At the same time, the consultants who developed the formula for turning SIS scores into individual funding levels have been asked to revise that algorithm to correspond to the SIS-A, she said.

Disability Services: a Lifetime Commitment

Meanwhile, Gallivan has tried to set a different tone for presenting the needs of individuals with developmental disabilities to the state Budget Office. 

“I’m not saying that people don’t know” what the Division of Developmental Disabilities does, “but a lot of people really don’t know,” she said with a chuckle.

“So I think it’s really important to paint a picture” of the service system and the people in the middle of it, Gallivan said.

Budget officials should know who the division serves, whether they live with their families or elsewhere, the kinds of services they receive, why the services are important to them and their families, the actual costs of providing those services, and the expected outcomes, Gallivan said.

That’s a different approach than seeing the system as a list of line items, she said.

It’s important for the fiscal arm of state government to understand that “we are the long-term care system,” Gallivan said.

“People think of the elderly as being the long-term care system, but they’re only in there for a few years,” she said.

“We’re talking birth to 100” in developmental disabilities, she said.

Legislators must understand that they can’t take money from individuals with developmental disabilities and give it to someone else, Gallivan said.

“In this system, everyone who comes through the door will have a life-long need for some kind of support because of the nature of their disability,” she said.

It’s not analogous to the mental health system, where funds may be shifted because one person is in recovery and another is not, Gallivan said.

A Focus on Families

In any presentation she makes, Gallivan said, she tries to emphasize the need to support families who have a member with developmental disabilities living at home with them.

Many families want their loved one at home, she said. "Ffrom a bureaucratic perspective, it’s (generally) the safest place they’ll be,” she said, “and the cost of services in the family home will be less than they will be anywhere else.”

“So how can we invest in families and recognize them as caregivers? We talk about people as caregivers of those with Alzheimer's, but we have people who are caregivers of people with developmental disabilities who face a lot of challenges” and have their own need for support, Gallivan said.

She suggested families should have access to more respite care and should be able to get financial support for modifications like wheelchair ramps.

Gallivan also indicated technology might help families keep tabs on their loved ones, although options like bedroom cameras might not be universally welcome in some homes.

The full range of supports for families “need to become a very strong focus,” Gallivan said, “and the type of planning we need to do with families is very different.”

“You need to talk about the whole family and what the family needs are,” she said.  

Families and individuals who advocate for themselves must be part of the conversation, Gallivan said.

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

 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: “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

“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.

DOJ: No Merit to Rhode Island's Objections to Compliance Fund

By Gina Macris

Saying Rhode Island’s objections have no merit, federal lawyers for a second time have urged a U.S. District Court judge to set aside state dollars to fund the so-called “sheltered workshop” consent decree – or to fashion whatever remedy he sees fit.

“The State’s objection to funding the Consent Decree is concerning and brings into questions its commitment to making the changes required,” lawyers for the U.S. Department of Justicewrote in a May 16 filing with the Court.

“Thus this Court must act to provide adequate incentive to the State to fund theConsent Decree, which it undoubtedly has the power to do,” the DOJ lawyers wrote to Judge John J. McConnell, Jr.

The DOJ’s plan would require the state to pay $5,000  each day it misses various compliance deadlines, and an additional $100 a day for each person whose services are delayed or interrupted as a result of inaction, with a cap of $1 million a year.

As an alternative to paying into the proposed Consent Decree Compliance Fund , the DOJ lawyers suggested that McConnell  come up with his own remedy.

The government’s remarks came in a filing in which it expressed surprise that the state is now offering “meritless objections” to paying into the proposed fund to  fulfill its responsibilities under provisions of the Americans with Disabilities Act (ADA).

In 2014, a DOJ investigation found the state for decades had illegally segregated adults with disabilities in sheltered workshops that paid sub-minimum wage, and in day programs cut off from the community. Rhode Island then agreed to federal supervision over a ten-year period to transform its system to emphasize supported employment in the community, adopting an “Employment First” policy.

The 2014 agreement marked the first such consent decree in the nation aimed at turning around daytime services that violate the 1999 Olmstead decision of the U.S. Supreme Court.

But the decree is just one part of a much broader, aggressive push begun by the Obama administration in 2009 to enforce the  Olmstead order, which said that Title II of the ADA requires agencies to serve individuals with a variety of disabilities, day and night, in the least restrictive environment that is appropriate.

In Rhode Island, the DOJ’s civil rights division earlier in May asked McConnell to put the court monitor in the case in charge of a Consent Decree Compliance Fund, citing the state’s continued failure to implement reforms.

The court monitor, Charles Moseley, would decide how to spend the money to benefit adults with disabilities.

Marc DeSisto, the state’s lawyer, objected, saying, in part, that the proposal amounts to a contempt order without the procedural rights enabling a defendant to show it made its best efforts to comply but was thwarted by forces beyond its control.

On May 16, the DOJ replied that “a finding of contempt would be appropriate at this juncture,” but its proposal does not ask for that. Instead, the Consent Decree Compliance Fund is envisioned as a vehicle for funding the consent decree, something the state said it wanted to do, according to the latest DOJ arguments.

During the last few months, all sides have agreed – in open court – that the developmental disabilities system does not have enough money to meet the consent decree requirements.  

Moseley, the monitor, told McConnell at one point that if the state didn’t meet certain benchmarks now, it would be impossible to achieve overall compliance by the time the decree expires on Jan. 1, 2024.

It was the state’s lawyer, DeSisto, who initially approached the DOJ and the monitor to ask for an evidentiary hearing so that the judge could gauge the state’s progress on compliance and decide what yet needed to be done to put the state on track to meet long-term goals.

At the hearing, held April 8, the state could not provide an accurate census of the individuals covered by the consent decree, the DOJ noted, but it did present evidence about a plan for achieving compliance going forward.

Now, the state is objecting to its own plan,  the DOJ lawyers said.

“After two years of noncompliance,” federal lawyers wrote, “it is appropriate and necessary, in the absence of commitment by the State to the basic compliance measures outlined in the Proposed Order, for the Court to take action.”

Judge to Consider Remedial Plan

 By Gina Macris

U.S. District Court Judge John J. McConnell, Jr. is poised to consider a remedial action plan to hasten Rhode Island’s compliance with a two- year-old federal consent decree requiring the state to provide community-based daytime services, including employment supports, to people with developmental disabilities.

The U.S. Department of Justice (DOJ) and the state have “jointly determined that, in order to facilitate compliance with the consent decree in this matter, the parties would benefit from a court ordered remedial action plan,” according to a proposed order filed with McConnell in Providence March 1.

 The judge is scheduled to hear the status of the case on Monday, March 14 in Providence, although a spokeswoman for the Court indicated March 8 that the hearing date may be rescheduled. (Update: March 14 at 10 a.m. confirmed as date and time) 

 The proposed Court order, along with a supporting joint motion submitted by the DOJ and the state, spell out a road map for the Court to proceed in considering the facts in the case over the next two months.

In a telephone conference Feb. 24 requested by the state, all sides agreed that three issues stand in the way of full compliance, according to the proposed order. The order and the supporting motion both cite money, the number of integrated, community-based placements, and leadership.

Both sides committed to compliance

"Both Plaintiff and Defendant remain committed to resolving the above listed issues and any other issues identified by the court," according to the joint motion, signed for the DOJ by Vanita Gupta, head of the civil rights division, and for the state by lawyer Marc DeSisto.

DeSisto and lawyers for the DOJ, as well as a Court monitor in the case, have told McConnell that the state budget does not now have enough money allocated to implement the consent decree. The monitor, Charles Moseley, also has said that if the state does not meet certain benchmarks now, it will not be able to comply with the final requirements of the order once the decade of federal oversight concludes in 2024. 

The joint motion and proposed order both call for an evidentiary hearing on April 18 that would require the appearance of the head of the state Office of Management and Budget as well as the directors of three agencies responsible for carrying out the consent decree: the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the Office of Rehabilitation Services (ORS) of the state Department of Human Services and the state Department of Education (RIDE). 

 A week before the hearing, the state would provide the judge with a written report on the status of compliance. During the hearing itself, “Defendant will provide the court with the information necessary to issue an order for remedial action to spur prompt compliance,” according to the proposed court order.

 The parties would reconvene May 2 so that the state can report on “progress relating to funding, placements, and the leadership required for full compliance,” as well as any other court order that may be outstanding at the time.

The monitor has sought the appointment of a secretary-level Consent Decree Coordinator who would have the authority to oversee compliance efforts of the three state agencies involved.   A secretary-level coordinator has been appointed only on an interim basis in recent weeks. 

RIDE is involved because it is responsible for providing transitional services, including school-to-work opportunities, for youth in special education as they approach their 21st birthday. These youth are of particular concern, according to the consent decree, because they are “at risk of entering sheltered workshops and facility-based day programs” when they reach adulthood.” 

Origins of the Consent Decree

The federal case started with a U.S. Department of Labor investigation into sub-minimum wages paid to people in one sheltered workshop. An expanded DOJ inquiry found that (Cut: found) teenagers and adults with developmental disabilities were being segregated from the general population in violation of the Americans with Disabilities Act (ADA).

The U.S. Supreme Court clarified the ADA’s mandate for integration in a landmark 1999 decision that many say struck down segregation for people with disabilities in the same sweeping way that Brown V. Board of Education banned “separate but equal” education for black students.

 The 2014 consent decree in Rhode Island, the first of its kind in the nation, spells out a series of specific deadlines for achieving an increasing number of supported job placements and individualized daytime activity plans over the 10-year period of federal oversight. 

Meanwhile, Governor Gina Raimondo has proposed a net increase of $8 million to the developmental disabilities budget now in place, with the total going from $229.7 million to $237.7 million for the period ending June 30. In the next fiscal year, developmental disabilities would receive a total of $235.2 million. 

Over the next 16 months, the governor’s plan would redirect more than $23 million within the developmental disabilities budget toward private agencies providing integrated daytime services. The state would create this financial boost largely by moving people out of group homes into shared living arrangements with families in communities throughout the state. 

This housing shift would involve 500 of 1300 people now in group homes moving into so-called shared living arrangements voluntarily by June 30, 2017, according to a BHDDH spokesman.  

Donna Martin, who represents an association of private agencies that support families offering shared living in their homes, has called the goal “very ambitious.”

Will the Budget Pass Muster with the Judge in Disabilities Case?

By Gina Macris

When Rhode Island Governor Gina Raimondo proposes a new state budget on Tuesday, Feb.
2, U.S. District Court Judge John J. McConnell, Jr. will be watching to see how the state plans to keep its promise to reform employment opportunities and other daytime services for people with disabilities.

 Rhode Island isn’t spending enough money to meet the deadlines set out in two and three-year-old consent decrees reached in landmark cases involving the Americans with Disabilities Act (ADA).

 And an independent Court monitor overseeing the state’s efforts has said that if Rhode Island doesn’t meet certain benchmarks now, it will be unable to accomplish long-term goals at the end of the decade-long federal supervision spelled out in the consent decree.  

 But at a hearing Jan. 26, a state lawyer told McConnell that Raimondo’s budget would be a “game changer” in advancing Rhode Island’s response to the mandates.

 An internal committee of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) tasked with redesigning services for people with developmental disabilities recommended $36 million in reforms last May,  but in an interview last Friday, a BHDDH spokesman said it is “very unlikely” that sum might appear in the governor’s proposal. 

If the Governor’s proposal falls short of McConnell’s expectations, it could set the scene for some courtroom drama during the upcoming months of budget deliberations at the State House.

The Court has the power to find the state in contempt – if it comes to that – and McConnell made it clear on Jan. 26 that he would not hesitate to use his authority if it is necessary. But said he hoped to avoid it.

 Let’s follow the case and the money at the heart of the issue before the Court.

The case surfaced in 2013 with a consent decree between the U.S. Department of Justice and the City of Providence over Providence teenagers with developmental disabilities, who had been segregated in a program called the Harold A. Birch Vocational School. Birch prepared them for a lifetime of rote assembly-line jobs –at sub-minimum wage – in a sheltered workshop for adults at an agency called Training Through Placement in adjoining North Providence.

 The 2013 settlement – the first of its kind in the nation - asserted the young people’s right to receive services to support them in employment and day activities in more integrated, community-based settings in accordance with the Americans with Disabilities Act.

 "The Supreme Court made clear over a decade ago (in the so-called Olmstead decision of 1999) that unnecessary segregation of people with disabilities is discriminatory. Such segregation is impermissible in any state or local government program, whether it be residential services, employment services or other programs,” a U.S. Justice Department spokeswoman said at the time.

A year later, in June, 2014, the Justice Department’s Civil Rights Division reached a statewide agreement with then-Governor Lincoln Chafee which mirrored the Providence settlement.

Today, 31 percent of Birch graduates are employed in community-based settings – up from 14 percent six months ago – but those numbers fall far short of the mandated goal of 100 percent, according to the independent Court monitor, Charles Moseley, whose oversight continues through 2024. 

 He and a Justice Department lawyer, Victoria Thomas, each laid out a laundry list of other deficiencies in the Jan. 26 hearing before McConnell, who said he wanted to see the parties before him again in three months. 

 Now to the money:

 In the fiscal year that ended June 30, 2005, Rhode Island paid $187.3 million in state and federal dollars to private agencies providing services to Rhode Islanders with intellectual disabilities, according to state figures. Currently, the state allocates $188.4 million to those services.  It’s all Medicaid money, with the state providing 45 cents on the dollar and the federal government paying the rest, according to the BHDDH spokesman.  

In the meantime, the number of people reaching adulthood with developmental disabilities has been increasing. The current annual rate is about 100, and the average yearly cost of supporting one person is $55,000. 

 From 2005 through fiscal 2008, the DD budget rose to $215.3 million. But as the shockwaves of the 2008 economic crash reverberated, the budget shrank, as did DD allocations in other states.

 While some other states started restoring money to DD services, Rhode Island slashed further.

 For the fiscal year ending June 30, 2012, the Rhode Island General Assembly chopped nearly $26.5 million off the allocation, reducing it from $206.5 million to just under $180 million. That’s a cut of 12.8 percent in one year.

And BHDDH put in place a reimbursement system that does not cover all the services that agencies provide during daytime activities – only face-to-face contact with clients. The legwork necessary to set up job interviews or community activities, for example, is excluded. This arrangement “incentivized” the segregation of people with developmental disabilities in sheltered workshops and day facilities, Thomas, the Justice department lawyer, told McConnell on Jan. 26.

 Even though the BHDDH administration changed with the inauguration of Raimondo as Governor in 2015, the reimbursement system remains in place. Moreover, BHDDH allows agencies to collect the money owed for daytime supports only through a burdensome reporting process that requires documenting each worker’s time in 15-minute blocks, for each client. If a client is sick, the agency does not get its client-specific incremental payment for that day.   

Since 2011,  private nonprofit providers have cut workers’ pay to an average of $11 an hour, staff turnover has skyrocketed, and two agencies have closed their doors.

 In an interview on Friday, the BHDDH spokesman, Andrew J. McQuaide, acknowledged that satisfying the mandate for integration “fundamentally costs more than the system we have now.” He agreed that the system is geared toward “congregate centers for day programs and employment.”  Service providers should be held accountable, though, said McQuaide, the department’s new Chief Transformation Officer.

 Last October, Maria Montanaro, the BHDDH director, told a group of parents that the $36 million in redesign recommendations had been tabled because of the cost.

 On Friday, McQuaide said it’s “very unlikely” the $36 million in reforms would re-surface in the Governor’s budget proposal. 

“I’m unaware of anyone who thinks the state can afford to increase the DD funding by $36 million in a single year,” he said. “It would be unprecedented in a single fiscal year.”

“The question becomes how to sequence this,” McQuaide said.

 He said he couldn’t speculate on how the court will react.

 “There’s no way of knowing what would please the court,” he said. But “at the end of the day I am optimistic we will move in the right direction.”