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

Mixed Reviews on Employment From RI Consent Decree Monitor; Judge to Hear Compliance Status

By Gina Macris

Rhode Island has made “uneven”  progress in finding jobs for adults with developmental disabilities during the first quarter of 2017, according to an independent court monitor who oversees implementation of a 2014 federal consent decree intended to give adults with intellectual challenges more choice over how they live their lives.

The monitor, Charles Moseley, has filed his latest report in advance of a U.S. District Court hearing July 28 on compliance with the decree, which grew out of findings by the U.S. Department of Justice that Rhode relied excessively on  sheltered workshops paying sub-minimum wage and on segregated non-work programs.

Moseley said 62 individuals got jobs between January and March of this year, increasing the total number of placements to 544. That total is 340 more than the number of persons who had jobs 12 months earlier, according to data submitted by the state. Moseley said the number of placements for January through March of 2017 fell below an average of 85 placements per quarter for each of the three previous quarters. 

The first quarter of 2017 coincided with the launch of the state’s new incentive program for private agencies providing job-related services, but Moseley’s report did not make reference to that program. (Read related article.)  Complete employment statistics for April through June are not yet available.

Moseley’s report broke down the statistics according to three categories of adults with developmental disabilities who are protected by the consent decree: those who  had been in segregated sheltered workshops; those who had been in segregated day care facilities, and young adults who are at risk for long-term segregation after they leave high school. The consent decree also covers a fourth category of individuals; high school special education students who are at risk of segregation as adults. But the consent decree does not require the state to help them find jobs while they are still in school.

According to Moseley’s report, among the so-called “day target population”, a total of 262 had jobs on  March 31, an increase of 28 during the first quarter of the year. The total of 262 is more than twice the number the consent decree requires by Jan. 1, 2018. There are a total of 1,541 individuals in this category protected by the consent decree.

In the “sheltered workshop target population,” 9 individuals got jobs between January and March, bringing the total employed since Jan. 1, 2016 to 122. That number represents 81 percent of the consent decree benchmark of 150 placements for former sheltered workshop employees by Jan.1, 2018, according to Moseley’s report. At last count, there were a total of 658 current or former sheltered workshop employees protected by the consent decree.

Moseley said young adults, or members of the “youth exit target population,” gained 25 new job placements between January and March, for a total of 160 placements in that category. The consent decree requires job placements for all young adults the same year they leave high school.  Moseley said that with the current census of the “youth exit target population” at 497, the state had achieved only 32 percent of the number of jobs required by the consent decree for young adults.

Source: RI Division of Developmental Disabilities

For the 12-month period ending March 31, the total number of individuals protected by the consent decree grew from 2,962 to 3,621, an increase of 659, which Moseley attributed to the state’s improved data collection.

Moseley has repeatedly emphasized individualized career development planning as an integral part of the job search. Equally important is individualized benefits counseling, which Moseley has said is necessary to allow individuals to make informed choices about whether potential jobs will adversely affect Medicaid and other types of government supports. 

The latest statistics show that about 63 percent of all persons protected by the consent decree have career development plans and about 67 percent of those who are employed have had benefits counseling, according to Moseley.

Friday’s court hearing will be at 10 a.m. in Room 310, the historic library of the federal court building in Kennedy Plaza in Providence.  U.S. District Court Judge John J. McConnell, Jr. will preside.  

Click here to read Moseley's entire report.

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.

RI Budget Goes Into Limbo Over Car Tax Contingency Amendment Inserted By Senate

By Gina Macris

The $9.2 million Rhode Island budget, which appeared poised for final passage by the Senate on June 30, now hangs in limbo on the first day of the new fiscal year, July 1, a casualty of a dispute between the Speaker of the House and the President of the Senate over the Speaker’s signature car tax relief plan.

The situation means that by law, the levels of spending approved by the General Assembly a year ago remain in effect until the General Assembly resolves the Fiscal Year 2018 budget – and no one knows when that might be.

For Rhode Islanders who are elderly or have disabilities, the one exception to the spending freeze is separate legislation, on its way to the governor, which restores their free bus passes on the Rhode Island Public Transit Authority, a $5 million item.

But increases to direct care workers in both developmental disabilities and home health care fields remain up in the air. So do millions of dollars in reimbursements to private developmental disability service agencies, some of them for expenses already incurred in the fiscal year that ended June 30.

The dispute between House Speaker Nicholas A. Mattiello and Senate President Dominick Ruggerio, centers on a Senate amendment which would freeze the level of Mattiello’s car tax relief if, at any time during the six-year phase-out, the state has to dip into its rainy day fund.

During the floor discussion, senators said the state needed a safety net in the event the state cannot ultimately afford the overall $221 million cost of the phase-out, especially in light of uncertainty in Washington over billions of dollars in proposed cuts to Medicaid nationwide. Those drastic reductions would deal Rhode Island a severe blow in many human service programs, including those supporting adults and children with developmental disabilities.

The Senate passed the amendment, with the rest of the budget that had been approved by the House, with just hours remaining in the old fiscal year.

But by that time, Mattiello had adjourned the House and sent the members home. He gave no indication when he might call the House back into session.

In a statement, he said “Despite the House, the Senate and the Governor reaching agreement on a responsible and balanced state budget, I learned today that the Senate was likely to amend the budget on this, the last legislative day. This would have resulted in a long and unproductive night for the members and the public.  I urge the Senate to honor the original agreement and pass the state budget.”

Mattiello: RI Direct Care Workers Have Been Heard

By Gina Macris

During recent deliberations on the state budget that emerged from the Rhode Island House Finance Committee last week, legislators considered very carefully testimony about the plight of the state’s most vulnerable citizens and those who care for them, particularly with respect to nursing homes, House Speaker Nicholas Mattiello said in a briefing June 20.

Mattiello                         RI state PHOTO

The Finance Committee’s budget prevents any further reductions to Medicaid reimbursement rates to hospitals and nursing homes and commits $11 million in federal and state Medicaid funds to raise the pay of home health care aides and those providing direct support to adults with developmental disabilities.    

“Thank you for the viewpoint,” he said of those who testified for the direct care raises, and we’re glad that in these difficult fiscal times we were able to accommodate that,” he said.

Mattiello’s remarks signaled a growing awareness over the last year about poverty-level wages and high turnover which has destabilized the direct care field and, many say, affected the quality of care.

Along the same vein, the proposed $9.2 billion spending package approved by the House Finance Committee promises to restore free bus passes for the elderly and disabled, at a cost of $3.4 million a year for the next two fiscal years.

The compromise budget that will go before the full House June 22 also puts $26 million into Mattiello’s signature car tax phase-out, enabling 150,00 vehicles to fall off the property tax rolls in the fiscal year that begins July 1. And it partially funds Governor Gina Raimondo’s free tuition plan, allowing two years of free attendance at the Community College of Rhode Island for students who maintain a 2.5 grade average and meet other conditions.

Mattiello said he was proud of the budget, which uses a variety of approaches to close a $134-million revenue gap and still manages to deliver on promises made to Rhode Islanders.

“I didn’t say I was happy with this budget. I said I was very proud of this budget,” Mattiello said.

“You work with what you have and you maximize the benefit to the taxpayers. That’s exactly what we did,” Mattiello said.

State Rep. Joseph N. McNarmara-D-Warwick, echoed Mattiello’s remarks, saying he was particularly proud of the “core values we have represented as the majority of Democrats” and "have defended in a tough budget,” including free tuition, raises for direct care workers and the prevention of erosion of reimbursements to hospitals and nursing homes.

But Mattiello interjected, “I’m going to stop you, Joe. This is not a Democratic caucus. These are the values of the House of Representatives.” McNamara, the chairman of the House Committee on Health, Education and Welfare, also chairs the state Democratic Party.

As for the cost-cutting that must be done to balance the budget – including $25 million in unspecified reductions – Mattiello said: “We conferred with the Governor and the Senate. The Governor believes that although this will be difficult, it’s attainable and we agreed it can be done. “

While the budget uses one-time revenue to close some gaps, it will be paired with one-time expenses and will not add to the state’s structural deficit, Mattiello said.

Even though revenues are lower than expected this year, the economy seems to be going in the right direction, with unemployment down to a level not seen since before the recession of 2008, Mattiello said.

“This is our year to continue our momentum,” he said.  “We’re not going to tax our way” out of the revenue shortfall, “we’re not going to cut our way out of it,” but “we hope to grow our way out of it” as the economy continues to improve.

OP-ED: Trump's Trump's Medicaid Plan Would Force Draconian Choices On People With DD

By Maureen Gaynor

Maureen Gaynor (updated photo)

Dread. Our President has embedded dread into my vision of what my daily existence may be like in the near future. You see, I am a woman who has severe athetoid cerebral palsy.  I depend on people to assist me in just about every physical aspect of my life.  More about my own situation in a moment, but I am not alone in this feeling of dread.

There are about 4,200 people in Rhode Island who have developmental disabilities, according to the state, and we all depend on Medicaid, which supports programs to assist us in living our lives as inclusively as possible.

But President Trump has proposed a budget that would decimate Medicaid.  By capping Medicaid spending, President Trump would cut an estimated $610 billion to $1.3 trillion over the next decade, with the higher figure also taking into account the effects of the health care bill that recently passed the House. When I look up ‘decimate’ in the dictionary, it means to “kill, destroy, or remove a large percentage or a part of.” That is a word used to describe wars, plagues and atrocities that should be avoided at all costs to preserve human life. Let’s take a good, hard look at the very real effect these astonishing budget cuts would have on people with disabilities, starting with my own case.

I have done my hard work getting where I am today.  I come from a hard-working family that respects hard work and also values the concept of the family down to the core. My parents, who never got degrees but valued education, expected all of their four children to go to college, and they succeeded in that goal.  I was the one who drew the short straw when I was born a half century ago.  But I have learned not to let my cerebral palsy define me. And I wasn't given a free pass out of being successful.  I wanted to be successful, and that drive is even stronger today.  I became convinced that I could design buildings and residential homes to be more accessible for the disability community. In 1990, I graduated from New Hampshire Technical College with a General Associates degree in Building Construction Technology, followed by graduating from Roger Williams University with a Bachelor of Science degree in Architectural Studies. Unfortunately, jobs have been sparse since 1993.  Given my education and experience in the construction field, and my love in designing kitchens, I am pursuing work in kitchen design.

But my cerebral palsy DOES limit what I am able to do, physically, for myself. As I said, I depend on people to assist me in just about every physical aspect of my life. Activities like eating meals, dressing, showering, brushing my teeth, doing laundry, using the bathroom and a multitude of other activities I need assistance completing. I need someone to adjust the head pointer I am using to write this article.  All of these activities of daily living are needs—my needs are not “luxuries.”  I need to eat, or I will starve.  I need to use the bathroom, or I will get severely ill.  I need to shower, or I will smell.

President Trump, along with his Secretary of Health and Human Services, Tom Price, want to impose Medicaid Block Grants on all states, based on each state’s per capita ratio.  This means the federal government will allocate a pre-determined Medicaid budget for each state.  Each state must work within that budget.  Each state has its own Medicaid budget.  People with disabilities have different levels of need.  How is such a strict Medicaid budget going to cover all of the variable needs of people with disabilities?  President Trump has difficulty understanding the Constitution, let alone the needs, and the dreams, of people with disabilities.  I am convinced that President Trump hasn't sat down and had a genuine conversation with a person with a developmental disability.  Dread sets in once again.

So, what would my life under a Medicaid Block Grant system?  My dread comes from the expectation that services will be severely cut back, because the state will not be able to make up for the federal cutbacks and will have to stretch out the available dollars by reducing services to everyone. Here’s what I fear will happen to me:

 My supports to find employment will immediately disappear.  My hopes and dreams centered around working as a kitchen designer would be dashed because I wouldn't have any community hours.  Instead, that money would have to be spent on supports for someone else to get out of bed.

My daily community supports would cease. Getting out of the house would be another “luxury” for people with disabilities. If I cannot go to the supermarket, how would I buy groceries?  Well, I guess I will have to find someone who will shop for me.

If these devastating Medicaid cuts pass and my services are reduced, I would need to stay in bed three hours longer each day,  because I can’t get up on my own and there would be no one to help me.  I would have to go at least 14 hours without eating.  By the time I would get up, I’ll probably eat around 1 pm.  What would I eat—breakfast or lunch?  I would have to eat a lot because I would only have time to eat two meals a day.

 If I’m not mistaken, don't prisoners get three meals a day?  I think they do.  I, who never committed a felony, who was born with a brain disorder, and who has graduated college from Roger Williams University will be only allowed to eat two meals a day because President Trump dreams of building this “magnificent” wall on the Mexico border.

Can somebody tell me where the fairness in this scenario?  If I was face-to-face with the President, Tom Price or Paul Ryan, Speaker of the House, could anyone of them explain to me where the fairness is?  I don't think anyone of them could give a reason why it is more important to have a border wall rather than providing people with disabilities adequate time to eat three meals a day, and to have a life that they can call their own.

My biggest fear is the re-emerging of state institutions if these Medicaid cuts go through.  Medicaid money would run so thin that there will not be any other choice to care for the vulnerable people with disabilities by re-creating “collective housing” to care for their basic needs.

We cannot allow this administration to turn back the hands of time on the progress the disability community has made in the last century. The mindset of this administration is deplorable. We must rise up as a country and recognize all people must be treated equal.

Maureen Gaynor, of Smithfield, RI, is a social activist. She was one of four people who were arrested in Sherborn, Mass. on Inauguration Day, Jan. 20, after a reading of grievances against President Trump and a peaceful procession that blocked a road, prompting police to stop traffic. Gaynor can be reached at mogaynor@cox.net

RI Legislation Aims For Greater Accuracy And Transparency In Budgeting BHDDH, DCYF Costs

By Gina Macris

Companion bills in the General Assembly would require cost estimates for services to adults with developmental disabilities and children in state custody to become part of Rhode Island’s semi-annual Caseload Estimating Conference, a key budgeting guide. 

The bills, sponsored by Sen. Louis DiPalma, D-Middletown; and Rep. Teresa A. Tanzi, D-Narragansett and South Kingstown; specify that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Department of Children, Youth, and Families. (DCYF) would submit all their service costs, funded through Medicaid, to the Caseload Estimating Conference. 

Both BHDDH and DCYF have been plagued by chronic deficits. At BHDDH, a 2014 federal consent decree enforcing the 1999 Olmstead decision of the U.S. Supreme Court is putting additional demands on the developmental disabilities budget.

The executive branch prepares BHDDH budgets on the basis of “target” figures set by the Office of Management and Budget. In the past, BHDDH officials have said that the targets are not enough to cover actual service costs. This year, Governor Gina Raimondo accepted BHDDH figures in submitting her budget proposal to the General Assembly.

In a statement, DiPalma said, “The legislation is about honest and transparent budgeting. We need an accurate accounting of how many individuals we are serving in these vital programs, so that our budget reflects the associated costs, or makes program adjustments, or both.” 

He said about 3,000 children and teenagers are in DCYF care and roughly 4,000 adults with developmental disabilities depend on services from BHDDH.

Tanzi said, “Accurate caseloads will ensure the General Assembly is able to fully understand and appreciate the budgetary requirements of the agency to meet their obligations to our state’s vulnerable children and families. This legislation is about caring for our most vulnerable citizens but doing so in the most responsible way for the taxpayers.”

Medicaid accounts for about 31 percent of the state’s budget, according to the House Fiscal Office. That is roughly $3 billion in expenses annually, with each state dollar matched by slightly more than one federal dollar. Of all Medicaid funds, BHDDH spends 12.3 percent of and DCYF accounts for 1.4 percent.

In addition to adding BHDDH and DCYF to the Caseload Estimating Conference, DiPalma’s and Tanzi’s bills spell out the managed care reporting requirements of EOHHS in greater detail.

Current law allows agencies other than DHS and EOHHS to participate in the Caseload Estimating Conference but does not require them to contribute data.  It is not clear why DCYF and BHDDH have not been included in the Caseload Estimating Conference in the past.

The Caseload Estimating Conference runs back-to-back with the Revenue Estimating Conference in November and May. There are three principals; the House and Senate fiscal advisors and the state budget officer, who reach agreement through consensus on the latest estimates for revenue and for expenses in the human services, including Medicaid and a general public assistance program of about $1.5 million.

The governor relies, in part, on the November conference report to prepare the budget that is submitted to the General Assembly in January. The House and Senate use the results of the May conference as a basis for finalizing budget negotiations. 

The bills: S 0266 and H 5841

Budget Testimony: Need For DD Raises Critical, Stable Services Demand Double Current Funding

tom Kane                         RI capitol tv Image

By Gina Macris 

This article has been updated. 

As others had done before him, Tom Kane told members of the House Finance Committee that he “could not stress enough” the importance of the General Assembly approving an additional $6.1 million to lift the poverty-level pay of some 4,000 front-line employees of private agencies under contract with the state to care for adults with developmental disabilities.  

At the same time, Kane, CEO of AccessPoint RI, one of those private agencies, said in a hearing April 11 that the overall funding for developmental disabilities is only about 50 percent of what is needed for service providers to regain the financial stability they once had and help their clients receive the supports they need and deserve. 

All together Governor Gina Raimondo seeks General Assembly approval for raising the currently enacted developmental disability budget of $246.2 million by $10.5 million over the next 14 months, with $4.4 million of the increase applied before June 30. Another $6.1 million would be added for the fiscal year beginning July 1, for a total of $256.7 in the fiscal year ending June 30, 2018.

Kane explained to members of the Finance Committee’s Human Services Subcommittee, led by Rep. Teresa A. Tanzi, D-South Kingstown and Narragansett), the different kinds of pitfalls he saw in Raimondo’s attempts to offset the cost of the raises by cutting expenses in other areas – or not covering some necessary spending at all.  

For example, Kane said, AccessPoint had a $107,000 increase in health insurance rates this year. ”There is no money” to cover that cost, he said. “We spend almost $1.2 million in health insurance for 158 people,” he said.  Kane said he could not expect his employees, many of whom make less than $11 an hour, to contribute more to health insurance, so other adjustments were made. He did not elaborate. 

“But at some point there’s going to be a collision between all these additional costs” and direct care workers, Kane said. In written remarks, he said the “cost of other insurances, building maintenance, rent, vehicles, fuel and office supplies continue to increase, adding to the financial strain on organizations. These costs should not be seen as extraneous. They directly relate to our ability to focus our full attention on good quality service provision,” Kane said.

He also zeroed in on some line-item savings that Raimondo has budgeted to offset the cost of the second consecutive raise for direct care workers, particularly the plan to reduce group home costs by $2.1 million in state funds. That ongoing effort, driven by economic and policy considerations, aims to move group home residents to less costly shared living arrangements in private homes - a process that requires clients to actively agree to the change. 

During the transition, there must be a consideration for maintaining the living arrangements of the individuals left behind in the group homes, Kane said, recalling a case in which two of four people in one AccessPoint home opted for shared living. Because the agency could not afford to keep the house operating with only two residents, it sought supplemental funds from the Division of Developmental Disabilities for a few months to cover outstanding expenses while it figured out its long-range plan, Kane said. The home finally closed, he said.

The example illustrates how, during a transition, “you are balancing two systems at the same time, “ Kane said.

“If you don’t pay attention to the current system with the same amount of zeal as the new system, people will get lost,” he said.

In fact, the state so far has been unable to realize much savings from the emphasis on shared living, only $100,000 of a target of $2.6 million in state funds in the current fiscal year, according to officials of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Since last July, a total of 48 group home residents have committed to shared living. That figure is 18 shy of a target of 66 individuals for the fiscal year ending June 30.

Kerri Zanchi, Director of the Division of Developmental Disabilities, said that of the 48, 28 have moved since December, when the division began addressing issues that were barriers to shared living arrangements, like a need for physical modifications to some houses to make them more easily accessible, as well as extra medical and behavioral supports needed in the host homes. She said the division is also considering a range of other alternatives to group home living.

Ultimately, Kane said, a budget is a “representation of the values of our state.”  The care for people with disabilities and the salaries paid to caregivers either will reflect the dignity and respect afforded valuable members of society, or they won’t, Kane said.

 “I understand you have a lot of very difficult decisions to make,” he told the legislators, “and the numbers (revenues) aren’t looking great this year, which are going to make all those decisions even tougher.”

But Kane asked them to look at historical spending for developmental disability services, which he said are now only $9 million more than they were in 2010. In the meantime the demands of a 2014 federal consent decree with the U.S. Department of Justice, as well as new Medicaid rules for Home and Community Based Services (HCBS), make the job of supporting individuals with disabilities much more complex and expensive, he said. 

Traditionally, he said, support has been provided in “congregate” settings, or facilities “where you have groups of ten people with one staff person. “

“Under the consent decree they have to be either at a job or in the community,” he said. Those settings demand ratios of one staffer for each client, or no more than three clients, depending on the circumstances, Kane said.  In addition, the consent decree requires job coaches to be trained to a specific certification. and trained workers will demand higher pay, Kane said.t

The latest statistics indicate the current average pay for direct care workers is $11.14 an hour, before taxes, a figure that reflects a raise of about 32 cents effective last July 1, according to Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association which represents 25 of some three dozen private providers of developmental disability services.

The hourly reimbursement rate the state pays the employers for direct care workers is $11.91, which includes both wages and most – but not all – of employers’ actual costs for overhead and fringe benefits. That figure is still lower than the hourly reimbursement rate of $12.03 the General Assembly authorized in July, 2011  at the same time it cut a total of $24 million for private provider services, according to a chart prepared by James Parisi of the Rhode Island Federation of Teachers and Health Professionals.

In October, 2011, three months after the General Assembly acted, BHDDH reduced the actual reimbursement rate to $10.66 an hour, according to Parisi’s calculations.  Since then, the rate has been climbing incrementally to its current level of $11.91.

Parisi represents workers at the Trudeau Center in Warwick, where the starting salary is now $10.71 an hour.

Tori Flis, a service coordinator at one agency, which she did not name, said that even though there has been a slight increase in wages in the last year, the turnover is “just as high.”

Martin, of CPNRI, put the average turnover at one out of three workers a year, or 33 percent, although it varies from one agency to another.  Employers are unable to fill one out of six vacancies, and it costs an agency an average of $4900 every time it must search for a replacement and train a new hire, Martin said.  

Markella Carnavalle, who works at Trudeau, described the impact that turnover can have on individuals with developmental disabilities.

One client, who had grown attached to a worker who had to leave, was “crying for weeks,” she said.

That person had behavioral issues and didn’t want to work or eat, Carnavalle said. The client believed the worker left because “they didn’t want to be with me,” Carnavalle said, but “you can’t say the person needed more money. They don’t look at it that way.”

“You become a part of their lives and they become a part of yours” over time, Carnavalle said.

Flis, meanwhile, said the workers she supervises all have two and three jobs to make ends meet. Some work as many as three consecutive 12-hour shifts at different agencies – a total of 48 hours straight.

Those kinds of conditions lead to burnout, abuse and neglect, Flis said. The only reason she can afford to work one job at Trudeau is that she is married to a teacher who has a good salary and fringe benefits, including a pension, Flis said.

In another part of the current budget,  BHDDH officials and the legislators disagreed on whether there is funding for a developmental disabilities ombudsman, a position approved by the General Assembly last year after a woman died in a state-run group home. The state-run residential system is separate from the private system. 

The legislators and a member of the House fiscal advisory staff, Linda Haley,  said a total of $170,000 had been included in the BHDDH budget for the position.

Representing BHDDH, Christopher Feisthamel, the chief financial officer, and Zanchi, the developmental disabilities director, both said they understood it was an “unfunded mandate.”  Haley and BHDDH officials spoke informally after the hearing but reached no agreement on the status of the position.

(This article has been updated to correct the total cost of health insurance for AccessPoint RI, which is $1.2 million, not $12 million, according to CEO Tom Kane.)

RI Advocates In Action To Host Information Session

Rhode Island’s Advocates in Action, a non-profit educational organization aimed at empowering adults with disabilities to advocate for themselves, will sponsor a free informational session Thursday, March 30,  on “Frequently Asked Questions” about federal and state-funded Medicaid services offered through the Division of Developmental Disabilities.

Members of the organization’s current leadership class have surveyed recipients of developmental disability services on their primary concerns and will share the top questions and answers during the session, from 7 to 9 pm. at the Crowne Plaza Hotel in Warwick, according to a spokeswoman. The leadership class includes recipients of developmental disability services and individuals who support them. 

Topics on the agenda include applying for services, finding a place to live, looking for a job, planning for supports, appealing decisions made by the state, and living in the community.

Pre-registration is not required, but those planning to attend are asked to RSVP by phone to 877-532-5543 (toll free) or by email to aina@advocatesinaction.org

Low Wages Create Labor Shortage in RI DD Services; Advocates Testify for Higher Pay

By Gina Macris

Low wages for workers who provide direct care for adults with disabilities in Rhode Island have led to such a crisis that some agencies lose 80 percent of their front-line staff within six months, although the average annual turnover rate is 33 percent.

To fill the gap, their employers spend millions of dollars in overtime and in training new hires, only to lose them again.

Advocates for the developmental disability service system spelled out the consequences of poverty-level wages for direct care workers during a hearing before the Senate Finance Committee March 21.

A Rhode Island College expert submitted written testimony which said that an underpaid workforce results in instability, anxiety, and a diminished quality of life in the people it serves. 

The new developmental disabilities director, Kerri Zanchi, also linked the stability of the workforce to the quality of services and outcomes for the people it serves. 

Governor Gina Raimondo has proposed adding $6.1 million for raises to direct care workers in the budget beginning July 1. If it passes, it would provide the second annual raise –albeit a modest one – for some 4,000 part-time and full-time caregivers.

The first raise was enacted under pressure from federal enforcement of a 2014 consent decree. The $5-million line item added about 36 cents an hour for front-line caregivers, giving them an average of $11.18 an hour retroactive to July 1, 2016, according to Sen. Louis DiPalma, D-Middletown, the first vice-chairman of the Senate Finance Committee.

DiPalma is leading a drive to increase the average wage for direct care workers and home health care workers to $15 an hour by July 1, 2021. Testimony during the hearing indicated that Massachusetts is on track to reach that goal in 2018.

DiPalma also noted that Rhode Island’s minimum wage rose 30 percent between 2012 and 2016, from $7.40 an hour to the current $9.60 an hour, while the average pay for direct care workers increased 1.6 percent during the same period.

Governor Raimondo is seeking a 90-cent increase in the minimum wage, or $10.50 an hour, for the fiscal year that begins July 1.  

The interstate disparity in wages, compounded by the fact that many Rhode Island residents can just as easily work in Massachusetts as in their home state, puts the developmental disability system at a distinct disadvantage in competing for employees.

Rhode Island’s system is “economically inefficient,” said Jim Parisi, spokesman for the Rhode Island Federation of Teachers and Health Professionals, who represents workers at Trudeau Memorial Center, one of about three dozen private developmental disability service providers in the state.

Donna Martin, director of the Community Provider Network of Rhode Island (CPNRI), said that an average of about 16 percent of jobs go unfilled, forcing employers to use overtime to fill vacant shifts, particularly in situations where safety requires a certain minimum level of staffing.

In some agencies the job vacancy rate is as high as 25 percent, according to Rebecca Boss, the acting director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Martin, meanwhile, said reports from 18 of the 25 CPNRI member organizations indicate they spend a $2 million a year on overtime, suggesting that the total statewide could be higher. Turnover, which includes training new hires, costs an average of about $4900 per person, she said.

A raise this year is expected to be slightly bigger than the average of about 36 cents an hour enacted in the current year. The exact amount is difficult to calculate in advance because the rate the state pays providers reflects wages and some, but not all, overhead costs, Martin said. And overhead costs vary from one provider to another.

The workforce crisis is the biggest single issue her membership faces, Martin noted.  Data she submitted to the committee indicated that the demand for staffers who provide direct support of adults with developmental disabilities is expected to grow 38 percent by 2022.

In written testimony, A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, linked the labor shortage to a diminished quality of service for individuals with disabilities – an issue which is at the center of ongoing enforcement efforts of the 2014 federal consent decree.

With some agencies losing more than 80 percent of new hires within six months, Antosh said, workers cite low pay and the complexity of the work as the chief reasons they leave. They must work two or three jobs simply to make ends meet, he said.

A growing body of research documents that a stable, high quality direct support staff produces positive results in the population it supports. Those benefits include “increased personal competence, increased employment, increased social networks and social capital and increased satisfaction with life,” Antosh wrote.

“A direct support workforce destabilized by low wages, limited opportunities for professional development and a lack of a career ladder results in instability and anxiety in the lives of the people they support,” Antosh said.

Those who depend on services have “decreased opportunities for community connection, decreased employment, and a general decrease in quality of service,” Antosh said.

Quality service, with access to community-based employment and non-work activities, are a key goal of the 2014 consent decree and a subsequent court order, which aim to enforce the 1999 Olmstead decision of the U.S. Supreme Court.

That ruling re-affirmed Title II of the Americans With Disabilities Act, which says that individuals with disabilities are entitled to receive services in the least restrictive environment that is therapeutically appropriate.The decision presumes that the community is the least restrictive environment. 

At right are submitted to the the Senate Finance Committee March 22 by the Community Provider Network of Rhode Island, a trade association of 25 private agencies that provide services to adults with developmental disabilities. In the graphic, DSP stands for "Direct Support Professional," the title given to front-line workers. The average hourly wage does not include raises enacted  that took effect July 1, 2016.  

Judge McConnell: Consent Decree Progress Should Not Distract State From Long Road Ahead

By Gina Macris

U.S. District Court Judge John J. McConnell, Jr. says Rhode Island has made considerable progress in laying the groundwork to comply with a three year-old consent decree aimed at improving the lives of adults with developmental disabilities.

But that progress should not distract all concerned from “how far we have to go,” McConnell said.

In a quarterly review of the case on March 10, McConnell called attention to the remarks of the U.S. Department of Justice (DOJ), Nicole Kovite Zeitler, who spoke of the state’s progress and the unrealized potential of the consent decree to transform lives for a generation. 

“From where we were a year ago the work the state has done is commendable,” Zeitler said, “but the ultimate goal of the 2014 agreement is the transformation of services” for adults with developmental disabilities.

“These people have goals, just like anyone else,” Zeitler said.

Yet, a recent review of the day services typically offered adults with disabilities conveys a lack of purpose.  “There’s a feeling that attending a day program is just something people do,” she said.

The DOJ is committed to ultimate compliance with the consent decree, Zeitler said, but the decree means more than financing plans for services.  

Rather, the effort must put individuals’ goals and dreams at the center of the process and incorporate ongoing quality assurance practices to ensure continued compliance with the consent decree, she said.

Zeitler referred to a review of the day services of 21 adults by consultant William H. Ashe that was incorporated into a recent report to the court by the independent monitor in the case, Charles Moseley.

In many cases, Ashe found the signposts of individualized or “person-centered’” planning absent.  The service planning process required by the state  ”feels rigid and automatic,” Ashe noted. ”The ISP (individual service plan) for a person this year may often look remarkably similar to the one that was done last year. The funding that agencies receive is based on assessed ‘functioning level’ and not based upon what people may want or actually need,” Ashe said.

”Agencies are often in a situation where their staffing levels prohibit them from individualizing supports to the extent that is necessary to really implement services that are based upon real choice,” he said.

The monitor, Moseley, has given the state notice in a recent report to the court that he wants changes in the funding and planning process that meet the “person-centered” requirements of the consent decree. The state must give him progress reports quarterly, beginning April 1.

McConnell asked why the percentage of young adults finding employment was so low – only 22 percent. Moseley said the percentage dipped as the state complied with a request he made last fall to fully identify all eligible individuals who have left school since 2013.

The count of the so-called “youth exit” group initially stood at 151 young adults with developmental disabilities. By November the figure had jumped to 501, and, now is 516, Mary Madden, the state’s consent decree coordinator, told the court.  

The number of young adults with jobs is 109, according to the latest reports of the state to the monitor.

Referring to a provision of the consent decree decree which requires “all” young people to have jobs the same year they leave school,  McConnell asked why the employmentbenchmark for young adults is so “aggressive”.

Zeitler said the goals were designed that way because the generation going through school now is learning the skills necessary to prepare for adult life.

These young people have the most to gain from the consent decree and the most to lose without it, Zeitler said. They know their own potential, but under the old system they would spend years in isolation from the larger community, she said.

The 2014 consent decree settled findings of the DOJ that the state relied on sheltered workshops and segregated day programs in violation of Title II of the Americans With Disabilities Act, which was reaffirmed in the Olmstead decision of the U.S. Supreme Court in 1999. The Olmstead decision said that individuals with disabilities have a right to receive services in the least restrictive environment that is therapeutically appropriate, which is presumed to be the community.

The Rhode Island decree is not the first Olmstead enforcement action in the country, but the first one that addresses daytime programs that segregate adults with disabilities. Because they ard the DOJ.

A year ago, the state had made virtually no effort to implement the consent decree and lacked the financing, data, and staff to respond to requests made by the monitor. After an evidentiary hearing in April, McConnell issued a multi-faceted order which put the state on short deadlines for responding to discrete tasks – or face contempt proceedings.

So far, the order has brought results:  $11 million more in federal-state Medicaid funding, a larger staff to work on policy changes, and better cooperation and communication among the agencies responsible for implementing the agreement – the Department of Behavioral Healthcare, Developmental Disabilities, the Office of Rehabilitation Services, and the Rhode Island Department of Education.

One part of McConnell’s order has led to an incentive program for service providers to find jobs for their clients and help them stay employed. That program has placed 20 new hires since January, although Zeitler said the state needs to have “frank discussions” with service providers about continued gaps in job placement targets in two of three segmentsof the population represented by the consent decree.    

Moseley, the monitor, has followed McConnell’s lead in adopting short-term deadlines for specific tasks he has assigned the state. One such inquiry led to the identification in November of young adults with autism or multiple disabilities who hadn’t previously been counted as part of the consent decree population. That’s what boosted the so-called “youth exit” population to more than 500.

More recently, Moseley has enumerated dozens of tasks relating to the individualization of services, better internal quality improvement efforts, methods of funding, employment, and other consent-decree issues, along with short-term deadlines for responses.

Jennifer Wood, General Counsel to the Secretary of Health and Human Services, the head of the state’s response to the consent decree, said Rhode Island now has the bureaucratic “infrastructure” to delve into the actual service delivery system.  “Person-centered planning is at the heart of that,” she said.

The next court review will be scheduled for mid-July, but McConnell said he wants to receive interim progress reports from Moseley.  McConnell also noted that from time to time, he receives letters from parents and makes them part of the case file, which is a public record. 

Related articles: 

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

"Monitor Seeks Changes In BHDDH Funding Methods to Satisfy Consent Decree"

"Monitor Wants Mountains of Details to Push Compliance With RI Olmstead Consent Decree"

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

By Gina Macris

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

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

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

Source: State of Rhode Island 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Click here for the monitor's data report.

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

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

By Gina Macris

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

Mary Madden                          File Photo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pat Abbate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI Gov Appoints Wallack HHS Secretary; Wood To Continue to Lead DD Effort; UHIP Woes Continue

By Gina Macris

The Rhode Island Department of Human Services has begun re-hiring - months after it laid off about 70 workers in conjunction with the roll-out of a dysfunctional automated benefits system – to help Rhode Islanders who face hardships from delays and denials caused by the broken computer system.

That is but one step going forward that Governor Raimondo announced at a media briefing Wednesday, Feb. 15, when she released a scathing report on the Unified Healthcare Infrastructure Project, or UHIP, compiled by Eric Beane, the acting director of the DHS and her chief operating officer.

Blaming the vendor, Deloitte, for delivering a “defective system,” Raimondo also warned that it will take 60 to 70 days to stop the backlog in applications from growing and about a year to fix the system.  Beane’s report, completed over the last thirty days, showed the problem was much worse than she had previously believed, the Governor said. 

She apologized to Rhode Islanders for a situation she said was “unacceptable, inexcusable, and intolerable.”  

She introduced Anya Radar Wallack as the new Secretary of Health and Human Services  (HHS). Wallack formerly served as Medicaid director and the director of the state’s health insurance exchange under the Affordable Care Act.

Elizabeth Roberts, who had made a career of health care reform as a state senator, lieutenant governor and HHS secretary, submitted her resignation Wednesday. Raimondo accepted it, she said, because she agreed with Roberts that the problem needed a “fresh set of eyes.”

 Roberts had taken the stance that the system could be fixed quickly, despite the glitches, but Beane’sunvarnished analysis showed that not to be the case, Raimondo said. 

As Roberts’ long-time deputy, Jennifer Wood had been heavily involved in trying to fix the troubled UHIP rollout. Wood, who has served both as Deputy Secretary and General Counsel of HHS, will continue as General Counsel and will remain in charge of the state’s efforts to comply with the 2014 federal consent decree mandating integration of daytime services for adults with developmental disabilities, according to Beane.

Among thousands who have suffered hardships from the UHIP fiasco are individuals with developmental disabilities applying for adult services from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Last September, just as BHDDH solved an eligibility backlog in applications, many of them from young adults leaving high school, the introduction of UHIP caused months-long delays in the release of the money necessary to actually pay for approved services. In December, there were an estimated 100 young adults who had services delayed or expected services to be delayed as a result of the UHIP snafu, according to one informal report from the Rhode Island Parent Information Network.

Timely service is an issue of concern to an independent court monitor in the enforcement of a 2014 federal consent decree requiring community-based developmental disability services.

At the press conference, Beane said the backlog in all types of applications will continue to grow unless there is a “staffing surge to address the timelines.”

Beane’s report said Deloitte assured the state the computer system was ready to go live when it was not.

Raimondo said the state continues to withhold tens of millions of dollars (about $68 million of a $364 million project)  and is re-negotiating its contract with Deloitte. “It’s tense,” she said.  But she emphasized that UHIP can be fixed.

Raimondo said she has come to realize that the state needs to have more high-level officials with the technical expertise to analyze a vendor's claims and call out mistakes. In general, the public sector has been lacking in that regard, she said.

There had been warnings from federal officials that the computer system was not ready for a state-wide roll out, but human services officials decided against a try-out period.

Former DHS director Melba Depena Affigne and her chief digital officer Thom Guertin resigned in January under pressure from Raimondo. 

Click here to read Beane's report

RI Job Seekers with DD May Seek Help at Provider Fair Friday as State Tries to Boost Employment

 By Gina Macris

Rhode Islanders with developmental or intellectual disabilities who want to work can explore the job-development services of 14 private agencies during a fair Friday, Jan. 6, at the Arnold Conference Center on the campus of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals in Cranston. 

The fair runs from 9 a.m. to 1 p.m., according to a spokeswoman for the Executive Office of Health and Human Services. 

Of the state’s 36 private providers of developmental disability services, 14 have confirmed their attendance, the spokeswoman, Sophie O’Connell, said Wednesday. 

They are:

·         Avatar Residential, Inc.

·         Bridges, Inc.

·         Community Living of Rhode Island, Inc.

·         Community Work Services

·         Frank Olean Center, Inc.

·         Gateways to Change, Inc.

·         James L. Maher Center

·         Looking Upwards, Inc.

·         Perspectives Corporation

·         J. Arthur Trudeau Memorial Center

·         West Bay Residential Services, Inc.

·         WORK Inc.

·         Work Opportunities Unlimited Contracts, Inc.

·         Seven Hills Rhode Island 

A total of 17 agencies have finalized contracts with the state that will reward them with one-time stipends for staff training in supported employment, the placement of clients, and job retention for six months, according to O’Connell.  

A federal court order required the state to have performance-based contracts in place by Aug. 1, 2016 but negotiations between the provider agencies and the state on the performance-based supported employment contracts dragged on  through December. 

The contracts are intended to help the state comply with a 2014 federal consent decree requiring it to desegregate daytime services that emphasized sheltered workshops and isolated day programs. 

The original job fair flier put out by BHDDH in early December said more than 20 providers would attend Friday’s event, but that projection now appears to have been overly optimistic. O’Connell said the state hopes additional providers will commit to the fair before Friday morning. 

As recently as three weeks ago, members of the community-based Employment Force Task Force created by consent decree expressed concerns that the one-time bonuses in the incentive program were not enough to sustain expansion of job development and supported employment services. 

O’Connell, however, later said that agencies submitting applications for the program were able to “outline their ability to serve both their current clients and new populations.” 

She said Jan. 4 that the state hopes to finalize contracts with all the agencies soon. The state will monitor the agencies’ work in job-hunting and job retention as part of an effort to evaluate the impact of the program in the community, she said. 

Individuals who already are served by a private agency, as well as those who direct their own services, with family support, are welcome to attend.  Questions regarding the event may be directed to Tracey Cunningham, Associate Director of Employment in the Division of Disabilities, at 401 462-3857 or by email at tracey.cunningham@bhddh.ri.gov.

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.

Rhode Island's BHDDH Makes Streamlining Efforts in DD Application Process But Backlog Persists

By Gina Macris

 At any given time during the past several years, roughly 250 individuals with intellectual or developmental disabilities have been caught in a backlog, waiting for the state to determine whether they are eligible to seek a variety of support services.  

During an interview in late May, Andrew McQuaide, the Chief Transformation Officer at Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH), confirmed the size of the backlog. 

 McQuaide said that it’s “troubling” that eligibility workers have not been able to break through the backlog, even though there has been a “fairly consistent inflow and outflow of applications” for the last four years.

 Historically, younger adults have found it difficult to get eligibility decisions much before their 21st birthdays - the age they are no longer eligible for school-based programs in districts throughout the state.  Most of the backlog came from applicants aged 21 and older.

In some cases, according to evidence provided the U.S. District Court in April, delays in screening applicants has led to their turning 21 and sitting at home, waiting for appropriate services to be put in place.

That evidence was significant for two reasons:

• A two year-old federal consent decree requires meaningful options for integrated work and other community-based activities to be in place by age 18 for individuals who are at risk for segregation once they leave school.

• State law says individuals with developmental disabilities qualify for adult services at age 18.

In a new report to the U.S. District Court, which is overseeing enforcement of the consent decree, the state says the makeup of the “pending cases” has changed from predominantly older to predominantly younger applicants.

As of mid-April, more than 70 percent of pending applications came from individuals 16 to 21, most of whom are not planning to leave school soon, according to the report.

The report on eligibility issues is included in the state’s new communications plan, which the court ordered to be submitted by July 1. 

 The report on eligibility says that the “former practice and understanding within the community that applications would only be accepted at age 21 has demonstrably changed, mostly due to BHDDH’s engagement and commitment to transition planning for youth.”

 During the last year, the eligibility unit at BHDDH has given priority to deciding cases from transition-age applicants, according to the report.

Nevertheless, a chart with a breakdown of the 125 individuals aged 17 to 24 who were found eligible during the 12 months ending in June shows that 108 of the approvals were made in the 21-24 age group.

Eighty-six are turning 21 this year, and 22 other applicants are turning 22, 23, or 24. Among the younger applicants, 14 are turning 20 and 3 are turning 19.

No 17 or 18 year-olds were found eligible.

The report, while acknowledging that the “number of pending applications has remained relatively consistent,” makes no reference to a backlog. 

Data on the number of applications and the number of eligibility decisions prior to 2012 is hard to come by, McQuaide said, although he understood the number of new cases approved had slowed to a “trickle” from 2008 to 2011. 

McQuaide acknowledged the widespread belief among service providers and families during that period was that BHDDH stalled eligibility decisions in an attempt to reduce spending.

 In 2011, the General Assembly controlled the budget by cutting reimbursements to private service providers by 16 percent. 

“There’s absolutely zero evidence” that eligibility was delayed as a cost-cutting tool, McQuaide said, but “unfortunately, that perception still persists.“ 

McQuaide emphasized that the eligibility unit is working as hard as possible, making 250 to 300 decisions a year.

He said the responsibilities of the three caseworkers and support and supervisory personnel go beyond eligibility determinations to include other tasks associated with applicants transitioning into the service system, such as:

• Attending Individual Education Plan meetings for high school students in special education

• Facilitating applications for individuals’ Medicaid funding to the Department of Human Services

• Coordinating a referral to the BHDDH assessment unit, where the level of funding is decided

• Writing a “referral narrative” that can be used by service providers to better understand the needs of prospective clients.

McQuaide said during the May interview that that one option for addressing the backlog might be to increase the size of the staff for a limited period of time.

The Executive Office of Human Services has not responded to repeated requests for additional information on the backlog and clarification on related issues.

The communications plan says the eligibility unit underwent a continuous improvement, or LEAN exercise, in June that was coordinated by the Office of Management and Budget.

As a result, eligibility workers will begin meeting with potentially eligible high school students and their families 18 months before they anticipate leaving school to make sure they have at least begun the application process for adult services and to encourage them to start learning about potential service providers.

Once an application is received, the eligibility unit will have 30 days to screen it and make a decision as long as no additional information is needed.

 (The document says in one place that applicants have 60 days to submit additional information and in another place that they have a 45-day deadline.)

 Applications that remain incomplete are removed from consideration and the applicant must begin the process again. This practice will prevent incomplete applications from “sitting for extended periods of time, in some cases years, waiting for documentation,” according to the report.

After an eligibility determination, the assessment unit must determine a level of funding for the individual, and an individual service plan must be written before services can begin.

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

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.  

Andrew McQuaide to Become Senior Director at Perspectives Corp. in North Kingstown, RI

By Gina Macris

Andrew McQuaide, the Chief Transformation Officer who has been identified with reforms in the Rhode Island's developmental disability services for the last three years, will join the state’s largest direct service provider, Perspectives Corp., as a senior director.

McQuaide’s last day in the Division of Disabilities at the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) will be July 22.

McQuaide has worked for the state in various capacities in connection with consent decree implementation ever since U.S. Department of Justice secured an initial agreenent to close a sheltered workshop in North Providence in 2013. A statewide agreement to settle violations of the Americans with Disabilities Act followed a year later. 

McQuaide, who has two siblings with developmental disabilities and is a board member of a national sibling leadership organization, said he wants to develop well-rounded professional experience while helping Perspectives expand and improve its integrated services.

A resident of Charlestown, he was the youngest member ever elected to the Charlestown School Committee and is a graduate of the University of Rhode Island. McQuaide also has a master’s decree in public administration from Syracuse University.

Jane Gallivan, Experienced Administrator of DD Services, To Help RI With Transition

By Gina Macris

Jane Gallivan, a veteran state-level administrator of developmental disability services, will guide Rhode Island’s compliance with a federal consent decree mandating greater integration of adults with intellectual challenges in their communities.

Gallivan, who was instrumental in shaping compliance with a long-running federal consent decree in a de-institutionalization case in Maine, has agreed to serve as a consultant through December, according to Jennifer Wood, Deputy Secretary of Health and Human Services.

Wood said in a recent interview that it is not yet clear whether Gallivan would also agree to work as an interim director of developmental disabilities while the state searches for someone to succeed Charles Williams, who will retire July 22.

It was under Gallivan’s watch in Maine in 2010 that a federal court dismissed the second of two consent decrees resulting from a 1978 class action lawsuit over conditions at the Pineland Center in New Gloucester, an institution for individuals with disabilities that closed in 1996.

The original consent decree was succeeded in 1994 by another decree that focused on expanding community-based services. Gallivan served as Director of the Office of Cognitive and Physical Disability Services in Maine from 1982 to 2011, according to her LinkedIn profile.

From Maine she went to Delaware, where she directed developmental disability services until her retirement in February of this year.

Last December, she was honored by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) for her pioneering work in both Maine and Delaware, and as a member of the NADDDS Board.

Gallivan began her career working directly with persons with developmental disabilities, according to NASDDDS.

In addition to her familiarity with consent decrees, she has experience developing other innovations that Rhode Island wants to implement, according to Deputy Secretary Wood.

These areas include:

•        Supports for community-based employment

•        Shared living arrangements

•        Introducing electronic records

Wood said Maria Montanaro, the outgoing director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), was referred to Gallivan through her involvement in NADDDS.

Montanaro made arrangements with Gallivan to serve as a consultant before Williams announced that he is retiring as director of the BHDDH Division of Developmental Disabilities, Wood said.

EOHHS is searching for successors to both Williams and Montanaro. 

(This article has been updated to reflect the length of Gallivan's contract.)