RI DD Public Forum Highlights Personal Choice, Inclusive Initiatives For Redesiging Services

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

By Gina Macris

During a public forum on Rhode Island’s developmental disability services Aug. 8, Deanne Gagne talked about the importance of personal choice in improving quality of life, for herself and others. 

“It’s really about the person in the center who’s driving the vehicle,” not the service system defining the options, said Gagne, a spokeswoman for Advocates in Action, a non-profit educational organization which encourages adults with developmental disabilities to speak up for themselves.

For Gagne on that day, personal choice turned out to be about the spontaneity of doing somethingmost adults take for granted: making a lunch date.

After the meeting, Gagne connected with an old friend who also attended the forum at the Coventry Community Center.

Because Gagne controls the way she uses her service dollars, she did not need to discuss with anyone how she and her wheelchair would get to and from the chosen restaurant.  Gagne’s assistant simply pulled Gagne’s cell phone out of the bag that hangs across the back of her chair and handed it to Gagne, who marked the date, time and place in her calendar and handed back the phone. That was that.

As a speaker during the forum, Gagne summarized the message of recent public sessions hosted by  Advocates in Action, in collaboration with the state and the Sherlock Center on Disabilities at Rhode Island College, on thinking “outside the system” or “outside the box” in planning for the future.

“It’s back to basics,” she said. “What do you want to do with your life, and what do you need to make that happen?”

Both a 2014 consent decree and a new Medicaid rule on Home and Community Based Services (HCBS) put personal choice at the heart of mandated changes in the approach to services. All developmental disability services in Rhode Island are funded by the federal-state Medicaid program.

One parent who has attended a recent Advocates In Action session on personal choice, or “person-centered thinking”, said there’s a long way to go before such a change becomes everyday reality.


“It seems like a giant step to get from where we are now to where we’re going,” said Greg Mroczek, who has two adult children with developmental disabilities.

None of the developmental disability officials who hosted the forum disagreed with him.

Zanchi           

Zanchi           

But Kerri Zanchi, the director of the Division of Developmental Disabilities, and her administrative team made it clear that they want the public to participate in creating a new system of services in a much more active way than is the norm when bureaucracies adopt change.

Kevin Savage, director of licensing, who leads a continuing effort to rewrite developmental disability regulations, said, “We want to have regulations that are meaningful to participants and their families.” The committee rewriting the regulations, which began working in the spring, includes representation from consumers and family members. Savage said a draft of the proposed regulations should be completed in September and released for public comment later in the fall.

Also on Aug. 8, the Division put out a new call for individuals interested in serving on an external quality improvement advisory council.

The advisory council would complement an internal quality improvement committee as part of a broad effort intended to make sure services are faithful to the requirements of the consent decree and Medicaid’s Home and Community Based Rule. 

Anne LeClerc, Associate Director of Program Performance, said she would field inquiries about the quality improvement advisory council. She may be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Zanchi, meanwhile, yielded the floor to representatives of a fledgling effort to revitalize family advocacy called Rhode Island FORCE (Families Organized for Reform, Change and Empowerment), an initiative of the Rhode Island Developmental Disabilities Council.

Semonelli

Semonelli

Chris Semonelli of Middletown, a leader of the group, said it aims to become a springboard for legislative advocacy, starting with an exchange of ideas in the fall among those affected by the developmental disability service system. A date for the event, entitled “Coffee and Cafe Conversation,” has yet to be announced.

The Developmental Disabilities Council plans to support the family advocacy group for up to five years, until it can spin off on its own, according to Kevin Nerney, a council spokesman. Anyone seeking more information may contact him at kevinnerney@riddcouncil.org or 401-737-1238.

Francoise Porch, who has a daughter with developmental disabilities, touched on a long-standing problem affecting both the quality and quantity of available services: depressed wages.

“Direct care staff can’t make a living working with our children,” she said.

The General Assembly allocated $6.1 million for wage increases in the budget for the current fiscal year, which Governor Gina Raimondo signed into law Aug. 3 after the House and the Senate resolved an impasse over Speaker Nicholas Mattiello’s car tax relief plan, which emerged intact.

Although the language of the budget says the raises are effective July 1, the fiscal analyst for developmental disabilities, Adam Brusseau, could not say during the forum exactly when workers might see retroactive checks.

The extra funding is expected to add an average of about 56 cents an hour to paychecks – before taxes – but the precise amount will vary, depending on the employee benefits offered by private agencies under contract with the state to provide direct services.

The latest raise marks the second consecutive budget increase for direct care workers and the first in a five-year drive to hike salaries to $15 an hour.

For high school special education students anticipating a shift to adult services, “there seems to be a logjam” when it comes to families trying to figure out how many service dollars they will have and how far the money will go, according to Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College.

Rosenbaum

Rosenbaum

Zanchi said the Division of Developmental Disabilities aims to administer assessments that are used in determining individual budgets a year before an applicant leaves high school and needs adult services.  But Rosenbaum said that based on her contact with families of young adults, a year does not appear to be long enough. 

She elaborated: after the assessment, called the Supports Intensity Scale, families must wait a month or more for the results. Only then can parents explore the offerings of various agencies.  They may settle on one agency, only to be told that the agency is not accepting new clients with their son or daughter’s particular need. Then, when families decide to design an individualized program themselves, they must begin planning all over again.

“A year is not enough,” Rosenbaum said.

Zanchi said she will look into the problem.

Mark Your Calendar for Tuesday:

The quarterly public forum on developmental disabilities hosted by the Rhode Island Department of Behavioral Health, Developmental Disabilities, and Hospitals will be Tuesday, Aug. 8, from 4-6 p.m. at the Coventry Community Resource Center, formerly the Coventry Human Services and Senior Center, 50 Wood St., Coventry.

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

Federal Judge Willing To Intervene In Rhode Island Budget Impasse To Protect Adults With DD

By Gina Macris 

A federal judge said today he is prepared to issue court orders to ensure that money keeps flowing in Rhode Island’s developmental disability system if the state budget impasse begins affecting services for adults with intellectual challenges.

Judge John J. McConnell, Jr., made that remark at today’s hearing (July 28) that reviewed the state’s progress in implementing a 2014 consent decree requiring an overhaul of daytime services to emphasize jobs paying at least minimum wage and integrated, community-based non-work activities for some 3600 individuals.

Rebecca Boss, the director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, told McConnell that she was “fairly confident” the budget dispute between the House and the Senate is having “no immediate impact” on the private agencies that count on state reimbursement to provide the day-to-day services.  However, she couldn’t say when things might change.

McConnell said he “would not be averse to entertaining court orders” so that the budget problem does not stand in the way of implementing the consent decree. “There are human beings involved,” he said.

He said it would fall to the U.S. Department of Justice to bring the issue before him, if and when it arises, because the state officials do not have the ability, or jurisdiction, to initiate any action.

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

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.

RI Employment First Task Force Seeks Data To Compare DD Eligibility Policy and Practice

By Gina Macris

A year ago, Rhode Island adopted a policy allowing students with developmental disabilities at least 12 months before they left high school to plan their entry into the adult world.

Now, the Employment First Task Force wants to know whether the policy and the reality are one and the same.

Word of mouth among special education professionals is that in some cases, the families of students notified they will be eligible for adult services from the state Division of Developmental Disabilities nevertheless aren’t given a budget in enough time to make a good adult service plan before they leave school.

Claire Rosenbaum, the Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, raised the issue at the most recent meeting of the Employment First Task Force July 18.

The task force chairman, Kevin Nerney, of the Rhode Island Developmental Disabilities Council, said he would ask state developmental disability officials in writing to come to the group’s next meeting with data showing how closely the state is adhering to its “eligibility by 17” policy.

The state established the policy in July, 2016, in response to a U.S. District Court order which said it must eliminate service gaps for eligible young adults once they leave high school. Judge John J. McConnell, Jr. had been presented with evidence that eligible young adults sat at home doing nothing for weeks or months after they left high school because adult services were not in place.

Young adults are one of four categories of individuals with developmental disabilities who are protected by a 2014 consent decree requiring the state to move away from sheltered workshops and non-work programs akin to day care toward purposeful activities in the community, with an emphasis on jobs paying at least minimum wage. 

The consent decree envisioned the Employment First Task Force as a group representative of adults with developmental disabilities, families, and community organizations that could serve as a bridge between the public and state government.

The eligibility policy says that, unless there is a need for extra documentation, students should be notified within 30 days of filing applications whether they will receive adult services. If they are eligible, they should be scheduled for an assessment of need, called the Supports Intensity Scale (SIS, within 30 days. And 30 days after the assessment, they should be notified of the individual funding allocations they have received, according to the policy.

A spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said July 20 that "it will take some time" to gather answers to detailed questions about adherence to the timelines in the "eligibility by 17"  policy and additional questions about the SIS.

Questions raised at Tuesday’s meeting about the eligibility timeline overlapped with queries contained in a task force report to Charles Moseley, an independent monitor appointed by the court to oversee  implementation of the consent decree.

In the report, approved by consensus Tuesday, the task force recommends that Moseley collect detailed information on various aspects of the application and funding process and appeals of decisions made by the state. The task force previously has requested application and eligibility data from the state but has not received it, according to the report.

Other sections of the report covered a number of topics, including “person-centered planning,” an individualized approach to arranging services that incorporates a range of personal choices that go far beyond menus of activities that may offered by one provider or another.

Moseley has made it clear he believes person-centered planning is the foundation for compliance with the consent decree,

Nerney, the task force chairman, said in the group's report that he believes such truly individualized planning “could have a greater positive effect on people’s lives than the consent decree itself. “

At the same time, “you can’t destabilize the current provider system while building a new one,” Nerney warned.

Rosenbaum said that truly individualized, or “person-centered” planning, a comprehensive process requiring a skilled facilitator, can’t be done properly with the amount of money available in the state’s developmental disability system.

The next meeting of the Employment First Task Force, open to the public, has been set for Aug. 8 at 2 p.m. at the Community Provider Network of RI, 110 Jefferson Blvd., Warwick. It will adjourn at 3 p.m. to avoid any conflict with the quarterly public forum sponsored by the state Division of Developmental Disabilities. That forum runs from 4 to 6 p.m. at the Coventry Department of Human Services and Senior Center, 50 Wood St., Coventry.

DD Supported Employment Program, Scheduled for Court Review, Falls Short of Initial Goals in RI

Source: PCSEP (Person-Centered Supported Employment Program) progress report - RIBHDDH - June 28, 2017

Source: PCSEP (Person-Centered Supported Employment Program) progress report - RIBHDDH - June 28, 2017

By Gina Macris

Rhode Island is struggling to move persons with developmental disabilities into productive jobs as envisioned in a federal consent decree reached with the U.S. Department of Justice three years ago, according to information obtained by Developmental Disability News.

A state report on the first six months’ operation of a pilot program to promote supported employment shows under-utilization of available funds and a job placement rate that falls far short of the state’s own goals.

The report, prepared by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, was obtained by Developmental Disability News.

Meanwhile, providers of services to persons with disabilities have told a federal court monitor and lawyers for the U.S. Department of Justice (DOJ) that they operate at a loss for the employment-related services they offer to clients enrolled in the individualized program, according to three sources familiar with the meeting.  

The primary reason is that the program does not pay the full cost of the services. That complaint was first registered when the parameters of the program were disclosed last winter.

In a meeting with the monitor and DOJ lawyers July 10, the providers also said they have inexplicably encountered problems billing for non-work services which are still needed by clients of the supported employment program.

Donna Martin, executive director of the Community Provider Network of Rhode Island, a trade association of developmental disability service agencies, confirmed that providers told the monitor and the DOJ that funds for the non-work services were “frozen.”

In an interview July 18, she said that the problem may be a computer glitch; an unintended consequence of the state’s efforts to track private providers’ billing for the supported employment program.

Martin said that Kerri Zanchi, the director of the Division of Developmental Disabilities at BHDDH, who inherited the administration of the supported employment program when she was appointed in late January, will meet with providers later this week to discuss a solution to the billing problem.

The problems outlined at the July 10 meeting and in the state’s progress report come in advance of the latest hearing in U.S. District Court, scheduled for July 28, as the court continues to track the state’s compliance with a 2014 federal consent decree.

That consent agreement requires the state to move away from over-reliance on sheltered workshops, by helping persons with developmental disabilities participate in integrated, community-based activities. The decree emphasizes jobs paying at least the minimum wage.

The state’s progress report on the supported employment program says there were 82 job placements between January and June 15, falling well below the pace necessary to achieve a self-imposed goal of 396 new jobs by the end of the calendar year. Of 513 client spaces available, 123, or 24 percent, are vacant, according to the report.

The report indicates that the program has spent far below the $6.8 million authorized by the General Assembly for the fiscal year that ended June 30, even taking into account the fact that the program wasn’t ready to accept clients until January, mid-way through the fiscal year.

The report says the state has made a total of $122,313 in performance payments for the training of job coaches, job placements, and job retention benchmarks. At the current rate, the report says the program will have paid out $390,000 in incentives by the end of the calendar year, far short of a total of $1.4 million set aside for that purpose during the first 12 months of operation.  

The report does not say how much of the $6.8 million has been set aside for providing job-related services, or how much providers have billed for these services, albeit at the same rates they would have been paid if the clients had not been enrolled in the special program.

Martin said that, as she understands it, there is usually flexibility between work and non-work categories in funding allocations for individual clients eligible for daytime services, so that an agency that provides more supports in one category during a particular month may draw on the funding for the other category as long as the billing does not exceed the total allocation for the quarter.

However, providers told the federal court’s monitor, Charles Moseley, and the DOJ that for clients of the supported employment program, there is no flexibility in the individual funding authorizations. In other words, if a client runs out of funds designated for non-work activities, the provider may not bill against the supported employment category. That money remains on the client’s account, but it is inaccessible, Martin said, explaining her understanding of the billing problem.

The DOJ, the monitor, and BHDDH all declined comment. A BHDDH spokeswoman said that information the department is compiling for the July 28 federal court hearing has not been finalized and could not be shared in advance with the media. Expenditures for the fiscal year that ended June 30 also have not been finalized, the spokeswoman said.

The federal officials also were preparing for the upcoming hearing when they hosted the July 10 meeting with providers. A four-page agenda prepared for that meeting, obtained by Developmental Disability News, asks providers to weigh in about all aspects of the program, including funding methods, as well as integrated non-work services.

The agenda indicates that the federal officials are particularly concerned that young adults with developmental disabilities – a group prioritized by the consent decree – are under-represented among 388 clients of the supported employment program.

Of 388 adults with developmental disabilities enrolled in the pilot employment program, only 87, or 22 percent, are young adults who have left high school since Jan. 1, 2013, according to the agenda.

At the same time, those 87 individuals represent less than 17 percent of the young adult category protected by the consent decree - 526 persons at last count. In all, the decree covers more than 3400 teenagers and adults of all ages, with the number updated quarterly.

Of three dozen private service providers operating in the state, 22 signed up for the supported employment program. Three of the 22 agencies have made no placements and another 7 have each made one placement from January through June 15. Two agencies have made 31 of the 87 job placements described in the report. The agencies are not identified by name but by letters of the alphabet.

The supported employment program offers bonuses to service providers who achieve goals in staff training, job placement and job retention, but it does not address an underlying problem of the state's low reimbursement rates to providers. The agencies, in turn,  pay their employees what are considered  depressed wages – an average of $11.14 an hour. These low wages have resulted in high rates of turnover and job vacancy, as well as high overtime costs to meet health and safety staffing requirements, and perpetual training of new hires.

While the supported employment program pays stipends once agency workers have completed a certificate program for job developers and job coaches, it does not pay the up-front costs of hiring and basic training for these workers, or other expenses associated with an agency’s capacity to find jobs for its clients.

Martin said that at the outset, providers hoped that the state would invest half the $6.8 million allocation for supported employment in start-up costs to help agencies expand their services, but instead the state put all the emphasis on performance payments.

Supported employment and related issues are likely to come up at the hearing before Judge John J. McConnell, Jr. on July 28 at 10 a.m.

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

photo by gina macris

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.”

 

RI Senate To Vote On $256.5 Million DD Budget

By Gina Macris

Rhode Island Governor Gina Raimondo’s request for an overall $10 million increase in developmental disability spending in the next fiscal year appears to be headed for full approval by the General Assembly, as the Senate prepares to vote on the $9.2-billion state budget before the current budget cycle closes June 30 and the July 4 holiday weekend begins. 

On June 22, the House ratified the recommendation of its Finance Committee, with Speaker Nicholas A. Mattiello, D-Cranston, saying in advance of the vote that legislators have heard the message of direct care workers making poverty-level pay in high-responsibility jobs.

The Senate Finance Committee is scheduled to act on the budget at a hearing June 27 at 2:30 p.m. in Room 211 of the State House.  A floor vote in the Senate is expected Thursday or Friday.

About $4 million of the developmental disability spending increase would be applied to the current budget and an additional $6 million would go into the new budget cycle beginning July 1. The total allocation for developmental disabilities in the next fiscal year would be $256.5 million.

Even as the Rhode Island House was deliberating, U.S. Senate Republicans in Washington unveiled a health care bill that would severely cut Medicaid funding -– the backbone of essential medical care and other support services for the poor and disabled throughout the country. Within 24 hours, enough Republican opposition to the bill emerged in the Senate to threaten its passage. 

The proposed state budget in Rhode Island includes a total of $11 million for one-time raises for home health care workers and those who work directly with adults with developmental disabilities. Those wage increases would raise the average hourly pay for developmental disability workers from about $11.14 to about $11.69 an hour.

The original language in Governor Raimondo’s proposal used a separate budget article to spell out assurances that the money set aside for the raises could not be used for anything else, but the House version eliminates that article and embeds those mandates elsewhere in the revised budget bill. 

Workers can expect to see the incremental boost in pay no later than Oct. 1. Three months later, on Jan. 1, 2018, the House-approved budget would raise the minimum wage from $9.60 to $10.10 an hour. On Jan. 1, 2019, the minimum wage would advance again, to $10.50 an hour.

State Sen. Louis DiPalma, the leader of a drive to raise the pay of developmental disability workers to $15 an hour by July 1, 2021, said the day after the House vote that he has already begun work on the next phase of the campaign.

Last fall, DiPalma’s “15 in 5” campaign issued an early call for direct care raises, while the executive branch was still working on the budget proposal. In January, when the governor submitted her budget to the General Assembly, she highlighted the pay increases, along with a hike to the minimum wage and other initiatives.  

Several bills intended to speed up the timetable for a $15 hourly wage were introduced in the House during the current session, including one sponsored by Rep. Jean Philippe Barros, D-Pawtucket, Deputy Majority Leader, which would set the starting date for that increase to next Jan. 1.

The prospective budget doesn’t support a $15 hourly rate, but Barros still got a hearing on his bill before the House Finance Committee on June 21.

Direct care workers do an “awful lot of work for some of the neediest” residents of Rhode Island, and “they certainly deserve the benefit for their labor,” Barros said.

Massachusetts is set to increase the wages of direct care workers to $15 an hour in 2018, a development that could exacerbate already high turnover in direct care work in Rhode Island.

Figures on turnover presented to the General Assembly in recent months range from 30 percent a year to 60 percent of new hires in the first six months. There are about three dozen developmental disability service agencies operating in Rhode Island and each one has a different rate of turnover.

Testifying in favor of Barros’ bill, Robert Marshall, spokesman for the Rhode Island Developmental Disabilities Council, said that high turnover, a problem for years, has had a negative impact on those who need care.

Moreover, the nature of the work is changing to emphasize more individualized services, Marshall said, an apparent allusion to new federal Medicaid requirements and federal court enforcement of changes in daytime developmental disability services under provisions of a 2014 consent decree.

The greater individualization means that jobs in the direct service field are no longer interchangeable, he said. 

“Massachusetts will be very happy for us to train the staff and then give them a nearly 50 percent increase” in pay, Marshall said.  In other words, he said, a worker in East Providence can drive an extra three miles and do the same job in Seekonk, Mass., for significantly more money.

The money that is now spent on training new workers and overtime to fill critical gaps in services would probably cover most of the pay increase, Marshall said.

Part of the $10-million increase in the developmental disability budget would be used to fill a $3 million shortfall in the current fiscal year in supplemental payments to private providers and to add another $500,000 to that allowance in the budget cycle that begins July 1. 

The combined increases would hike supplemental payments from $18.5 million to $22 million a year –about 10 percent of all reimbursements made to private providers of developmental disability services – a level that DiPalma, the vice-chairman of the Senate Finance Committee, has flagged as a sign that the standard funding formula for individual clients is not working.

The supplemental payments reflect successful appeals, on a case-by-case basis, of a funding formula applied to a controversial assessment which Rhode Island uses to determine an individual’s ability to function independently. The funding formula does not take into account a client’s goals and preferences in determining individual authorizations – a problem cited by a federal court monitor overseeing reforms to the developmental disability system.

All developmental disability services in Rhode Island are funded by Medicaid at a ratio of slightly more than one federal dollar for every state dollar.

Medicaid has long been an entitlement program in which the federal government matches state outlays for a wide range of services, ranging from health care and nursing home services to specialized educational and therapeutic services for children with disabilities and community-based supports for disabled adults.

The U.S. Senate Republican bill – devised behind closed doors and released on June 22 - would set per-capita limits on federal Medicaid reimbursements to states and threaten many of the services Rhode Island now offers.

The entire Rhode Island Congressional delegation has slammed the bill, saying it amounts to a massive transfer of wealth to the rich at the expense of the poor, the elderly and the disabled through $600 billion in tax cuts.

In a statement, Sen. Jack Reed said, “Trumpcare-supporting Republicans can make all the claims they want, but their motives are obvious: they want massive tax cuts for the wealthiest at the expense of hardworking Americans whose lives, in many cases, depend on access to care.”

Sen. Sheldon Whitehouse said the measure “would gut Medicaid with even deeper cuts than the wretched House version. This will blow huge holes in state budgets, forcing terrible choices between opioid treatment, care for seniors, and students with disabilities. And that’s just the beginning.  It goes after women’s health care. It would allow insurance companies to charge seniors more, and sell plans that don’t offer the basic care Americans expect. It would be bad for Rhode Islanders.”

Governor Raimondo said she will join Reed, Whitehouse and Reps. David Cicilline and James Langevin in “active opposition to this disastrous proposal." 

She accused Congressional Republicans of “trying to pass an immoral piece of legislation,” putting “American and Rhode Island lives at risk so that millionaires and billionaires can get a tax cut.”

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

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.

RI House Finance Votes For DD Worker Raises, Free Bus Passes, Supplemental DD Services

By Gina Macris

Despite tense negotiations around a $134-million projected revenue shortfall in Rhode Island for the next fiscal year, the House Finance Committee has approved an $11-million increase in federal and state funds to provide raises for direct care workers supporting adults with developmental disabilities and home health care aides in the next fiscal year.

Early the morning of June 16, The House Finance Committee sent an overall $9.2-billion spending package to the full House, which is expected to vote Thursday, June 22.

The Finance Committee’s revised budget also includes $3.4 million a year for two years to restore free bus passes for the elderly and disabled. Since Feb. 1, low-income elderly and disabled riders on the Rhode Island Public Transit Authority (RIPTA) have had to pay 50 cents each trip, and 25 cents for each transfer. During the next two years, the executive branch of government is to figure out a permanent solution to ensure that vulnerable Rhode Islanders have access to public transportation.

According to a House spokeswoman, the proposed budget adopts Governor Gina Raimondo’s request for raises for home health and direct care workers who support some of the state’s most vulnerable citizens, shouldering great responsibilities for poverty-level pay.

The Governor’s budget plan included $6.2 million — $3 million in state revenue and $3.2 million in federal Medicaid funds — for raises of about 5 percent for direct care employees of private agencies that provide most of the supports for adults with developmental disabilities.  Another $4.4 million –$2.2 million from state revenue and the rest from Medicaid – will raise the pay of home health care aides by 7 percent.

Assuming that the raises pass the House and Senate, some 4,000 developmental disability workers will see increases in their paychecks of about 55 cents an hour, before taxes, sometime before Oct. 1. They now make an average of $11.14 an hour, according to a trade association representing about two thirds of some three dozen agencies operating in Rhode Island.

The latest incremental boost in pay would mark the second consecutive year that home health aides and developmental disability workers would have received wage increases, although there appears to be a growing opinion in both the House and Senate that direct care workers remain woefully underpaid for the job they do.

Last fall, State Sen. Louis DiPalma, D-Middletown, launched a call for this year’s raises as the initial phase of a “15 in 5” campaign that would elevate direct care workers’ pay to at least $15 an hour in five years; by July 1, 2021. A resolution to that effect has passed the Senate Finance Committee, of which DiPalma is vice chairman.

Members of the House have proposed various bills or resolutions to reach that $15 mark sooner, or to ask the Executive Office of Health and Human Services to raise direct care workers’ pay by 28.5 percent to achieve parity with Connecticut and Massachusetts rates by October of this year. Those measures appear to have died in committee.

In hearings in both the House and Senate during the current session, however, legislators have heard testimony that Rhode Island has a tough time competing with Connecticut and Massachusetts for direct care workers, because those states are such an easy commute for many Rhode Islanders.

The House Commission on Vulnerable Populations has included a recommendation that the state strive for direct care wages that are competitive with neighboring states in its final report on its deliberations for the last several months.

During a recent meeting on a draft report, Commission chairman Jeremiah O’Grady, D-Lincoln, the Deputy Majority Leader, said it is clear that salaries for direct care workers have a relationship to quality of care and employee turnover.

“What we see are the most qualified employees going to other states,” he said, and “we hear about very high turnover rates – something like 60 percent – within the first six months” in Rhode Island.

Another factor that will undoubtedly have a bearing on future discussions of direct care pay is that the House Finance Committee agreed to phase in a 90-cent increase in the minimum wage, now $9.60 an hour. That rate would increase 50 cents, to $10.10 an hour, Jan. 1, 2018, and another 40 cents, to $10.50 an hour, on Jan. 1, 2019. That means that the pay of direct care workers will continue to hover around minimum wage or a little higher.

Meanwhile, Massachusetts has committed to raising its rates for direct care workers to $15 in 2018.

Complete figures on the developmental disability budget were not immediately available.But on June 19, a spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said that Governor Raimondo got all she asked for in developmental disability spending from the House Finance Committee except for $200,000 in supplements to the current fiscal year and an equal amount in the fiscal year beginning July 1.

Last July 1, the state Division of Developmental Disabilities started the current fiscal year with an enacted budget of more than $246 million. Raimondo’s total request for fiscal 2018, beginning July 1, was $256.7 million.

Apart from the raises for direct care workers, the Division of Developmental Disabilities has sought funds to cover an estimated deficit of $3.6 million in the existing budget because of supplemental payments needed to respond to successful appeals of funding allocated for individual client services.  Those payments – not reflected in a separate line item – were nevertheless budgeted at $18 million in the fiscal year ending June 30, according to fiscal analyses done by both the House and Senate.

In the fiscal year beginning July 1, Raimondo asked for an additional $500,000 for supplemental service allocations. That increase would bring the total for such payments to just over $22 million annually. In a Senate Finance Committee hearing earlier this year, DiPalma, the committee’s vice chairman, noted that these extra payments totaled about 10 percent of all reimbursements to private agencies providing developmental disability services. That was too much, he said, indicating that equation the state uses to assign individual funding in the first place needs review.

The compromise budget passed by the House Finance Committee absorbed the $134-million projected revenue shortfall in the next fiscal year through a number of approaches: using one-time revenue, scaling back the Governor’s economic development initiatives, and making a myriad of cuts throughout state government, among others. 

 The Raimondo administration also is expected to make $25 million in unspecified cuts. The $25-million spending reduction and other provisions based on certain assumptions for the future make the budget a tricky one to balance, said DiPalma, a leading advocate for those with developmental disabilities and others receiving Medicaid-funded services.

For example, he said, in the BHDDH budget, there is an expectation that the Eleanor Slater Hospital will be able to shift $1.6 million in operating costs from state revenue to third-party payers during the current fiscal year and an equal amount in the fiscal year beginning July 1. He indicated that achieving all the designated savings in state revenue in the current fiscal year might be a challenge when only ten days remain in the budget cycle.

The BHDDH budget also contains a variety of cuts to capital projects, although a department spokeswoman said funds for improvements to the Eleanor Slater Hospital were transferred to the Division of Capital Asset Management and Maintenance (DCAMM), which is part of the Department of Administration.

Despite his concerns about the ability of the state to make the required adjustments to balance the budget, DiPalma said that developmental disability funding is moving in the right direction, with legislators listening to the facts and figures presented to them about the need for quality care.

A more comprehensive picture of the budget is expected to unfold as it goes before the full House and Senate over the next two weeks.

RI Consent Decree Task Force Wants Feds To Look At Accuracy Of Assessments Used In DD Funding

By Gina Macris

This article has been updated.*

Seven months after Rhode Island state social workers were retrained to better administer a questionnaire used to determine Medicaid funding for adults with developmental disabilities, signs have emerged that not all the interviewers may be conforming to the highly scripted assessment process.

On June 13, the chairman of the Employment First Task Force said the group needs more comprehensive information about any continuing problems with the assessment, the Supports Intensity Scale (SIS). He said he will make a request in writing to the U.S. Department of Justice and a federal court monitor, asking them to look into the situation.

Rhode Island is in the fourth year of implementation of a 2014 federal consent decree asserting the rights of adults with developmental disabilities under provisions of the Americans With Disabilities Act to obtain the services they need to secure jobs and enjoy non-work opportunities in the community.

The consent decree is “very clear” on those rights, said the federal court monitor, Charles Moseley, who listened into the meeting in a conference call.

Moseley said he was “disturbed” to hear an account of a SIS interviewer who said that because a young man was employed, even part time, he could not have the extensive behavioral and medical supports that family members and the service providers said the man needed. In fact, without those supports, the young man could not keep his job.  The task force member who addressed Moseley by telephone in the meeting later asked not to be identified.

Another task force member, Claire Rosenbaum, Adult Supports Coordinator at the Sherlock Center on Disabilities at Rhode Island College, recalled two SIS interviews she has attended since the social workers administering them were re-trained. One was done very well. In the other, the SIS supervisor corrected the interviewer twice.

For example, an interviewer may ask whether certain behavioral problems occur, or whether they have occurred in the last year. But Rosenbaum indicated that the proper phrasing for the SIS is to ask what supports are necessary to prevent those behavioral problems.

The latter approach acknowledges the impact of existing supports in helping adults with developmental disabilities enjoy a better quality of life, something parents and providers had routinely complained was missing from the SIS before the interviewers were retrained.

*(On June 15, Claire Rosenbaum said her comments were not intended as criticism of the SIS interviewers but to make the point that the retraining of interviewers was followed up with supervisory coaching as reinforcement. The two SIS interviews she attended were appropriately administered, she said.  She said her comments, while intended to be positive, did not preclude the possibility that an interviewer or two may not be immediately absorbing the training and coaching provided).

SIS Has History of Controversy in RI

The way Rhode Island uses the SIS to establish funding has been criticized both by the monitor and the DOJ since 2014, when Justice Department lawyers found that there was at least the appearance of a conflict of interest because the agency which administers the questionnaire also allocates individual funding.

Since then, the fiscal arm of the agency which administers the SIS, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) has been transferred to the Executive Office of Health and Human Services (EOHHS).

But Kevin Nerney, the Task Force chairman, said that to the average Rhode Islander, “the state is the state.”  Task Force members floated the idea of having a non-state entity administer the SIS assessment.  

The American Association of Intellectual and Developmental Disabilities, (AAIDD), which developed the SIS, has urged states to avoid even the appearance of a conflict by making a clear separation, or firewall, between the actual interview and the allocation process.  

A U.S. District Court order issued in May, 2016, required the state to change its policy to specify that the  scores on the SIS will be “consistent with individuals’ support needs, separate and apart from resource allocation considerations.” 

Moseley, the monitor, in reporting to Judge John J. McConnell, Jr., earlier this year, the monitor, Moseley, took that idea a step further. In conjunction with bringing greater individualization to supports for adults with developmental disabilities, he has ordered the state to give him quarterly progress reports as it works toward changing its approach to determining needs and funding.  Instead of translating SIS scores into one of five funding levels, as it does now, the state should use the interview results to first draw up individual programs of support. Only then should it apply funding, according to the model envisioned by the monitor.

Meanwhile, Nerney, the Task Force chairman, said outside the Tuesday meeting that the group has repeatedly asked BHDDH over the past two years – without success - for the number of appeals filed by providers or family members contesting funding levels resulting from the SIS.

While that number has not been made public, state Sen. Louis DiPalma, D-Middletown, disclosed in a Senate Finance Committee hearing in April that the appeals generate a total of $21.5 million to $22 million a year in supplemental payments above and beyond the levels determined by the SIS. That amounts to about 10 percent of all payments made to the private agencies that provide most of the services.

Ten percent is too high, DiPalma said, urging BHDDH officials to rework the way they use the SIS.

Consent Decree Allows Exceptions to 'Employment First'

The Task Force also discussed various approaches to developing a variance process under provisions of the consent decree for individuals with developmental disabilities who can’t work or don’t want to work because they fear the challenges of the regular employment.  Language for one or more kinds of variances or exceptions is being drafted, task members reported.

In conjunction with an interim settlement between the City of Providence and the DOJ in 2013 and the subsequent statewide agreement in 2014, the state has adopted an “Employment First” policy which assumes that adults with developmental disabilities can work at regular jobs, with support.

This policy generally has been welcomed by young people, particularly those who have had internships as part of their special education programs in high school and looked forward to working as adults. 

But that reaction has not been universal.  After the policy was adopted in 2013, BHDDH abruptly closed most sheltered workshops without having any plan in place to gradually acclimate those clients to community-based services. The move generated a wave of anger from families whose loved ones had enjoyed the social aspect of the workshops and took pride in their paychecks, even if they were a fraction of the minimum wage. 

Since Governor Gina Raimondo beefed up the state’s response to the consent decree in 2016, various high-ranking state officials have made public assurances that no one will be forced to work if they don’t want to or are unable, contrary to what some families say they have heard from rank-and-file employees in the developmental disability system. 

In a task force discussion on Tuesday of what a variance to the “Employment First” policy might look like. Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, said she understands that some families are turning to segregated adult day care programs for their loved ones that are outside the system licensed by BHDDH. 

These adult programs, licensed by the Department of Health, may take private payments or federal Medicaid funding, according to anecdotal remarks by various task force members.

Moseley, the monitor, said that if Medicaid funding is involved, federal regulations emphasizing community-based services, similar to those of the consent decree, would apply. Both the consent decree and Medicaid regulations governing Home and Community Based Services (HCBS) derive their authority from the 1999 Olmstead decision of the U.S. Supreme Court. The High Court said that individuals with disabilities must be offered services in the least restrictive environment that is therapeutically appropriate, and that environment is presumed to be the community.

Kiernan O’Donnell, co-president of the Rhode Island Association of People Supporting Employment First, said that if families had more information, they wouldn’t be going to segregated programs.

The Task Force, meanwhile, discussed the importance of planning around the individual needs of a particular person. While the principal goal may be employment for one person, it may be health for another, said Deb Kney, director of Advocates in Action.

Planning is a “process. It’s not a form” for checking boxes, she said. Others agreed.

The Employment First Task Force was created by the 2014 Consent Decree to serve as a bridge between the community and state government, with membership drawn from community agencies serving adults and teenagers with developmental disabilities, those who receive services and advocate for themselves, and families. Nerney, the chairman, represents the Rhode Island Developmental Disabilities Council.

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

By Maureen Gaynor

Maureen Gaynor (updated photo)

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 Proposes E-Records For DD System That Raise Questions About Consent Decree Compliance

By Gina Macris

For the last five-and-a-half months, Rhode Island has been considering eight proposals for an electronic case management system to keep track of services for adults with developmental disabilities.

In part, the electronic system would satisfy demands for up-to-date information so that federal officials could better gauge the state’s compliance with a 2014 consent decree requiring it to shift to community-based daytime services to comply with provisions of the Americans With Disabilities Act.

But the solicitation also indicates that the design of the electronic case management system could conflict with implementation of other requirements of the consent decree, which call for individualization of services and a more flexible approach to delivering them.

Among the vendors submitting proposals is Deloitte Consulting, the company involved in the chaotic rollout of a statewide public assistance benefits computer system known as the Unified Health Infrastructure Project (UHIP), which went live last September. 

At last count, more than 10,000 individuals, which include those with disabilities, are experiencing difficulties with food stamps and other public assistance and medical benefits, according to state officials. And UHIP has contributed to confusion about caseload estimates, used by policy makers to calculate demands on the budget that begins July 1.

Deloitte and the state are still trying to fix UHIP and are negotiating a financial settlement for the $364 million project, although the company recently gave the state a $27 million credit, primarily to cover the cost of re-hiring workers previously let go to help de-bug the system.

The state is appealing a federal fine of $805,197 over the implementation of the project, and the U.S. Attorney’s Office is investigating separate allegations that the federal-state Medicaid program was billed for services that were not provided in connection with the UHIP rollout.

The language of the 116-page request for proposals concerning  the developmental disability program, issued last fall,  indicates that the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) would conduct business as usual in its funding and delivery of services in two key areas:

  • The use of a mathematical formula to translate the results of a standardized needs assessment called the Supports Intensity Scale (SIS) into one of five levels of funding, which in turn would define the scope of services, or “service packages.”
  • The continuation of a fee-for-service billing system for private providers, which pays out only when a service is provided face-to-face, in 15-minute increments during the day, and in 24-hour segments for residential programs, with rates subject to change on a quarterly basis.

The solicitation remains active even as the Division of Developmental Disabilities has signaled it is gearing up for an overhaul of existing regulations to comply with the consent decree. And in a report filed with the U.S. District Court in April, the state agreed to explore new approaches to funding to follow-up on statistics that showed at least one third of private agencies don’t have the ability to expand the kinds of services the consent decree demands.

The independent federal court monitor who is overseeing implementation of the consent decree, Charles Moseley, has said that funding must respond to the individual’s “goals and preferences” as expressed in an individual support plan.

In other words, the money should follow the person, rather than the other way around, as is currently the case.

During the month of May, the Division of Developmental Disabilities and the Sherlock Center on Disabilities at Rhode Island College have invited the public to attend presentations on the central idea behind personalizing services, or "person-centered" thinking; the notion that individuals with disabilities should have more control over their lives.

The regulatory overhaul will be based on that personalized approach, with families, consumers, and providers participating in the rule-writing, Kerri Zanchi, the division director, said at a recent public forum. 

Asked after the meeting how how changes in practice brought about by the new regulations would be funded, Zanchi said, “When we figure out what it (the service system) would look like, then we need to figure out the funding for it.”

The consent decree, meanwhile, also criticizes the fee-for-service reimbursement model for private providers as insufficiently flexible to accomplish the its goals, which focus on individualized community-based supports for jobs and leisure activities.

In response, BHDDH has established a pilot program for supported employment, which provides bonuses for staff training, job placement, and job retention. It has resulted in 40 new jobs since January, according to a BHDDH official.

But in light of the recent survey indicating gaps in providers’ ability to take on new clients, BHDDH has agreed to take a deeper look at funding.

Through a BHDDH spokeswoman, state officials declined to comment on the solicitation for proposals while bids are under evaluation. The eight bids were opened last Nov. 29, according to the website of the state purchasing office.

The request for proposals appears to respond, at least in part, to complaints about data collection expressed by both Moseley, the consent decree monitor, and the U.S. Department of Justice.

Moseley has said the information was so inadequate that it was impossible to tell whether the state was meeting employment targets and other requirements.  Just a year ago, state officials were struggling to come up with an accurate count of the total number of adults with developmental disabilities who were protected by the agreement.

Since then, the state has adopted a work-around to the existing system that can respond to specific queries from the monitor or the U.S. Department of Justice, but not on a real-time basis. The patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College. 

The budget for the electronic case management system has not been made public. The request for proposals (RFP) anticipated an initial three-year contract period beginning March 1.

Asked about the apparent delay, the BHDDH spokeswoman, Jenna Mackevich, said in an email that “it’s important that the agency take the time necessary to thoroughly evaluate proposals and conduct its due diligence during the purchasing process. “

During the evaluation period, the state also has allowed the expiration of a 120-day ban on vendors changing their proposals, which is spelled out in the RFP. The RFP said the state would consider not only price but various aspects of functionality in the proposals as part of its evaluation.  Vendors would be required to demonstrate their products.

To keep costs down, the state is seeking “off-the-shelf” software with customization not to exceed 15 percent. 

According to the RFP, the new electronic case management system would computerize all record-keeping for the developmental disability service system, allowing access by families, providers, and BHDDH staff for multiple purposes.

Besides Deloitte, the vendors are Consilience Software, of Texas;  Eccovia Solutions, Inc., of Utah; FELCOM, Inc., of Maryland;  FOOTHOLD, Inc. of New York; Mediware, of Virginia; Netsmart Technologies, Inc., of Kansas; and Therap Services, Inc., of Connecticut.

RI Report To Consent Decree Monitor Details Gaps in Community-Based Services for Adults with DD

By Gina Macris                                

Three years after Rhode Island agreed to desegregate its daytime services for adults with developmental disabilities, it does not yet have the staffing or expertise to support community-based work and leisure activities for all who want or need them.   

And while the state pushes shared living arrangements in private homes as a less restrictive and less costly alternative to group homes, nearly two thirds of the private direct service providers cannot help with the back-up supports necessary to make that option workable for additional clients.  

Overall, the private agencies report that inadequate staffing, training and funding are holding them back, according to a new report on “provider capacity” that the state has submitted to an independent federal court monitor on implementation of the 2014 desegregation agreement.

In a survey of 32 private service providers, the state found that 14 agencies (42 percent) cannot accept new clients seeking supported employment and 11 agencies (34 percent) cannot expand staffing for non-work community services.

These two types of community-based supports form the core of service demands mandated by the 2014 consent decree, which requires Rhode Island to comply with the Americans With Disabilities Act (ADA) by moving away from sheltered workshops and segregated day programs.

In addition, 20 agencies (63 percent) cannot take on new clients who may choose shared living arrangements, 16 agencies (50 percent) can’t accept new residents in group homes, and 15 agencies (47 percent) can’t offer supports to additional clients living more independently in apartments.  Finally, 25 agencies, or 78 percent, can’t provide temporary “respite” care to help families or hosts of shared living arrangements who otherwise cannot leave home.  Most adults with developmental disabilities live with their families.

The state included all service categories in a survey of “provider capacity” as part of a quarterly report submitted in mid-April to the consent decree monitor, Charles Moseley, even though he focuses only on daytime services.

The data on residential supports helps flesh out the picture of services that appear to be affected by low reimbursement rates and correspondingly low wages for direct care staff. The numbers also are relevant to an upcoming change in Medicaid regulations, separate from the consent decree, but similar in their emphasis on community-based services of all kinds for adults with disabilities.

As a result of the survey on provider capacity, as well as other data suggesting that about 18 percent of young adults have trouble getting appropriate first-time services, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said it would refine its data-gathering to better “evaluate how funding is affecting access to services in order to inform possible funding methodology and mechanism changes.”

BHDDH also said it would explore alternatives to “Project Sustainability,” the current set of funding and service regulations put into place by the General Assembly in 2011.

A spokesman for House Majority Leader Nicholas Mattiello defends “Project Sustainability” for bringing accountability to the developmental disability service system.

 In 2014, however, the U.S. Department of Justice found that Project Sustainability diminished access to integrated, community-based services in violation of the ADA.

Since that time, Rhode Island also has been preparing for a deadline of March, 2019 to comply with a new Home and Community Based (HCBS) rule promulgated by Medicaid which affects residential services for adults with developmental disabilities.  On May 9, however, the Centers for Medicare and Medicaid Services issued a bulletin extending the deadline for three years, until March 17, 2022. A BHDDH  spokeswoman could not say on Friday what effect, if any, the extension would have on the implementation in Rhode Island.  

The new HCBS rule and the consent decree both get their legal authority from the 1999 Olmstead decision of the U.S. Supreme Court. In Olmstead, the nation’s top court re-affirmed a desegregation mandate in Title II of the ADA, which says that all kinds of services for individuals with disabilities must be provided in the least restrictive environment that is therapeutically appropriate.

In Rhode Island, group homes historically have been the first choice of aging parents who find it difficult to provide 24-hour care at home for sons or daughters with complex needs. But BHDDH has a virtual freeze on new group home admissions, except for dire emergencies.

While adults with developmental disabilities are living at home, their family members might need a few hours or days of respite care, but historically, many have found it difficult to arrange that service. 

Among young adults looking for first-time services, those with complex medical needs and those who use sign language have had particular problems making appropriate arrangements, according to the BHDDH quarterly report to Moseley, the monitor.

The monitor’s report also included responses to Moseley’s requests for detailed progress reports for tasks where implementation of the consent decree has fallen short, including information from the Office of Rehabilitation Services (ORS), and the Rhode Island Department of Education (RIDE), as well as BHDDH. All three agencies are involved in implementing the consent decree.

The creation of a career development plan, which takes into account each person’s preferences, strengths, and need for assistance, is a key element in individualizing supports for developmentally disabled clients.  

Moseley had set a deadline of June 30, 2017 for all required career development plans to be in place, noting that Rhode Island didn’t have a policy or implementation strategy in place for career development planning until April, 2016,sixteen months after the deadline of Jan 1., 2015.

But BHDDH was able to obtain an extension of the deadline until Sept. 30 for adults with developmental disabilities who have been in sheltered workshops or segregated day programs. 

In its report to the monitor on career development planning, BHDDH wrote, “The first efforts emphasized compliance and simplicity in the approach to the plan. The next steps are to improve the quality of these initial plans, ensure that individuals have an active and leading role in their career development planning process, and ensure that actions are stated to meet the stated goals.” Read the report here.

Career development planning “has been a new concept to many people,” BHDDH said. 

During the month of May, BHDDH and the Sherlock Center on Disabilities at Rhode Island College are rolling out a series of public presentations on “person-centered planning,”  the concept of individuals having greater control over their lives. That idea is at the heart of career development planning and all other types of services for individuals with disabilities. The presentations are also a precursor to an invitation to families and consumers to assist in an upcoming effort to rewrite developmental disability regulations The schedule for the presentations is here.

The state’s quarterly report to the monitor also covered these topics: 

  • School-to-work "transition" activities for students with intellectual or developmental disabilities aged 14 and older, including at least two trial work experiences in the community, each lasting about 60 days.
  • A RIDE policy emphasizing long-range employment goals for high school special education students.
  • An ORS policy saying the agency will serve students younger than 16.
  • Strategies for increasing the average number of hours worked by adults with developmental disabilities.
  • A plan for increasing staff training at ORS and private provider agencies in various aspects of providing job supports for adults with developmental disabilities.
  • Strategies for increasing the number of  "benefits plans", which are individualized explanations of how - and if -work will affect a client's government assistance, so that job seekers can make well-informed choices about employment.
  •  Plans to further define the role of the Employment First Task Force, a committee representative of various segments of the developmental disabilities community that was created by the consent decree to serve as a bridge between state government and the public.

Moseley’s summary of the state’s various reports is here:

The next round of quarterly reports is due in mid-July. Judge John J. McConnell is scheduled to review the case from the bench in U.S. District Court on July 28.

 

Top Aide To RI Gov. Raimondo To Lead EOHHS; Policy Director For Providence Mayor To Run HHS

By Gina Macris

RI Governor Gina Raimondo has named Eric Beane, the top aide tasked with fixing the UHIP computer disaster, as Executive Secretary of Health and Human Services. 

Courtney Hawkins, chief policy officer for Providence Mayor Jorge Elorza, will become the new Director of the Department of Human Services (DHS). And Zach Sherman, Director of HealthSource RI, will take over the day-to-day management of the UHIP turnaround, according to a statement from Raimondo’s office issued May 12.

“Rhode islanders deserve and demand high-quality public services. I am confident the new leadership for our Health Cabinet will ensure better access to care and better outcomes for Rhode Islanders,” Raimondo said.

There has been a nearly complete turnover in the human services leadership since the start of the year, primarily because of problems with the UHIP computer system and with the management of the Department of Children, Youth and Families.

Beane has been with Raimondo since she took office in 2015, serving first as deputy chief of staff and then as chief operations officer, before the governor put him in charge of running DHS and turning around the $364-million Unified Health Infrastructure Project (UHIP) in January.

Hawkins, a Rhode Island native, “brings more than 15 years of experience working with social service agencies and in public policy” here and elsewhere, Raimondo said.

Hawkins has a bachelor’s degree from the University of Rhode Island and a master’s degree in social work from Columbia University. Before returning to Rhode Island in 2015, she worked as senior vice president at the now-bankrupt FEGS Health and Human Services, one of the largest social service agencies in New York City. The agency closed its doors in 2015.

UHIP, the largest information technology project ever undertaken by the state, has delayed eligibility decisions and healthcare and social service benefits for tens of thousands of Rhode Islanders – including some with developmental disabilities - since it was launched in September, 2016.

The botched rollout also cost the jobs of former EOHHS Secretary Elizabeth Roberts, the state’s chief digital officer, Thom Guertin, and the former DHS director, Melba Depena Affigne. 

In announcing the new appointments, Raimondo’s office said that Anya Radar Wallack, Acting Secretary of EOHHS since February, will return to the Brown University School of Public Health in June.

Beane is to start his new duties June 1 and Hawkins will take office June 12. Both appointments require confirmation by the state Senate.

Jennifer Wood, Leader of RI DD Consent Decree Compliance, To Leave State Government

Photo by Anne Peters

Photo by Anne Peters

By Gina Macris

Jennifer L. Wood, largely responsible for accelerating Rhode Island’s lackluster response to a federal consent decree affecting adults with developmental disabilities, is leaving state government to become director of the Rhode Island Center for Justice.

The non-profit public interest law center works with community groups and the Roger Williams University School of Law to strengthen legal services and advocacy on issues that reflect the most pressing needs of low-income Rhode Islanders, including housing, immigration, and workers’ rights.  

Miriam Weizenbaum, the board chair for the Center for Justice,  announced the appointment Wednesday, May 3, saying that Wood’s legal background in public interest law, combined with her extensive experience in education and health and human servicesin state government, “makes her an ideal leader for the Center for Justice at a time when basic rights are under significant challenge.” 

Wood was deputy secretary and chief legal counsel to Elizabeth Roberts until Roberts resigned in mid-February as head of the Executive Office of Health and Human Services amid fallout from the UHIP fiasco, the botched roll-out of a computerized Medicaid benefits system. Thousands of Rhode Islanders were left without a wide range of benefits, including from food stamps, health coverage, subsidized child care, and even developmental disability services. At the time Roberts left, Wood was demoted to general counsel.

AshleyG. O’Shea, spokeswoman for OHHS, noted in a statement that Wood has devoted two decades of her life to state service and said, “We wish her the best in her new endeavor.” 

In March, the office of the U.S. Attorney in Providence issued a demand for UHIP documents, saying it is investigating the “allegation that false claims and/or payment for services and/or false statements in support of such payments have been submitted to the U.S. government.“

In a statement May 3, Wood indicated that since the November election, she has been considering a change in career to go back to her roots. As a lawyer in the private sector, her work emphasized civil rights and disability rights. She represented inmates at the Rhode Island Training School and special education students, among others who otherwise might have lacked a legal voice.

Wood joined state government in 1998 as chief of staff at the Rhode Island Department of Education, leaving in 2007 to work as Roberts’ second-in-command after the latter was elected Lieutenant Governor. When Governor Gina Raimondo appointed Roberts as Secretary of Health and Human Services in 2015, Wood followed as deputy secretary and chief legal counsel.

At the end of 2015, when U.S. District Court Judge John J. McConnell, Jr. signaled that he would personally oversee enforcement of the consent decree affecting daytime services for adults with developmental disabilities, Wood took charge of moving the implementation forward.

At that point, the agreement had brought virtually no change to the lives of adults with developmental disabilities since it was signed in April, 2014. By all accounts, Wood moved the implementation into high gear. 

O’Shea, the OHHS spokeswoman, said Wood is turning over her responsibilities in developmental disabilities to other officials, including Dianne Curran, a lawyer who is consent decree coordinator, and Kerri Zanchi, the new director of developmental disabilities. They are in touch with the federal court monitor and the U.S. Department of Justice weekly, according to O’Shea.

The consent decree requires the state replace sheltered workshops and segregated day programs with community-based supports so that adults with developmental disabilities may seek regular jobs and enjoy non-work activities in a more integrated way. The desegregation of services for everyone with disabilities was ordered by the U.S. Supreme Court in the Olmstead decision of 1999, which re-affirmed Title II of the Americans With Disabilities Act. 

 

 

Rebecca Boss Named Director of RI BHDDH

By Gina Macris

Rebecca Boss, who has more than 20 years’ experience in behavioral healthcare and the treatment of substance abuse disorders, has been named Director of the Rhode Island Department of Behavioral  Healthcare, Developmental Disabilities and Hospitals (BHDDH), the state agency she has run in an interim capacity during the last ten months.

Governor Gina Raimondo and Acting Health and Human Services Secretary Anya Radar Wallack announced the appointment Wednesday, May 3. Boss’ appointment must be confirmed by the Senate.

In a statement, Raimondo said that Boss’ “commitment, leadership and vision over the last 13 years” at BHDDH "have been instrumental in moving a diverse department forward to meet the needs of our residents in a constantly changing service environment. I am pleased to have a strong leader with her depth of knowledge and respect from the community serving as the director at BHDDH.”

Boss, 53, previously deputy director of BHDDH, became acting director when the former department chief,  Maria Montanaro, left in June, 2016 after a 17-month tenure.

Boss began her career in residential care for youth and then moved to CODAC Behavioral Healthcare, Inc., where she provided clinical services and served in various managerial positions.  Boss joined BHDDH in 2004 as administrator for behavioral healthcare and was named deputy director in 2014.  

While at BHDDH, she has been recognized locally and nationally for creating innovative programs, including peer support services for emergency room patients who have overdosed.

Boss said she was honored by the appointment. "The Governor and her administration are committed to the populations served by the department,” Boss said. 

RI DD Director Invites Families to Help Overhaul Design of Services With Individual Needs in Mind

Photos by Anne Peters

Photos by Anne Peters

Kerri Zanchi, center, Director of the RI Division of Developmental Disabilities, is flanked by administrators Heather Mincey, left, and Anne LeClerc, right, as she addresses the audience at a public forum in Newport May 2. 

By Gina Macris

Beginning May 10, Rhode Island’s Division of Developmental Disabilities plans to involve the adults it serves, their families, service providers and advocates in a step-by-step process to overhaul the way it does business .

Kerri Zanchi, the new director of the division, told Aquidneck Island residents who attended a public forum May 2 at the Community College of Rhode Island that the initial discussions will inform an effort to re-write the regulations governing developmental disability services to put the needs and wants of its clients front and center. 

The changes have two drivers:

  • A 2014 consent decree requiring the state to correct violations of the Americans With Disabilities Act by providing employment supports and access to non-work supports in the community.
  • A compliance deadline of March, 2019 for implementation of a Medicaid rule on Home and Community Based Services (HCBS), which requires an individualized approach to care, treating individuals with disabilities as full-fledged members of their communities.  

Both the consent decree and the HCBS rule draw their authority from the 1999 Olmstead decision of the U.S. Supreme Court, which amounted to a desegregation order affecting all services for all individuals with disabilities.

 Zanchi used the term “person-centered” to sum up the kind of planning and practices that go into the new inclusive approach.  A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, elaborated.

A. Anthony Antosh

A. Anthony Antosh

“The way the system has worked forever is that someone else controls what people get. We want people with disabilities to get more control of their own lives,” he said. “Resources support part of their lives but not all of their lives,” he said.

He said that in several states, including Texas, Kentucky and North Carolina, faith-based support networks in various communities have resulted in a “dramatically broader network” of personal relationships for individuals with disabilities. “And 80 percent of them have jobs,” Antosh said.

To flesh out the concepts of individualization and integration and how they might work in Rhode Island,  Antosh and Zanchi will co-host a series of discussions to explore the idea and solicit comments throughout the month of May.

The first two sessions will be held in the morning and evening of Wednesday, May 10 at the Sherlock Center. (Details at end of article.)

 “It’s a lot of change. It’s a pivotal time,” Zanchi said. But “if you don’t have a strong person-centered practice, it’s really hard to move the system forward and comply with the consent decree and HCBS.”

Zanchi said she and her staff will pull together comments from all the public sessions and present the results to the public in the early summer, setting the stage for regulatory reform.

Howard Cohen

Howard Cohen

Howard Cohen, whose adult son has developmental disabilities, took a dim view of the current regulations.  While the goal was to “even up the playing field among the agencies” by establishing uniform rates of reimbursement, he said, the regulations resulted in “a lot of resources toward book keeping rather than managing care.” 

And “the last time, the regulations got ramrodded through,” Cohen said, an allusion to the regulatory changes adopted by the General Assembly in 2011 as part of “Project Sustainability.”

Kevin Savage, director of licensing for developmental disability services, said all those with a stake in the regulations – including families – will be invited to participate in writing new ones.

The new regulations will not be aimed at “correcting past mistakes” but will try to conform to the law reflected in the consent decree and in HCBS, he said. The process also is expected to result in 20 percent fewer regulations than there are now, Savage said.

Zanchi emphasized that compliance with HCBS will mean a change in case management, or the formal approval process for allocating resources to each person’s program of services.

Currently social workers, who have an average caseload of 205 clients per person, share the case management responsibilities with provider agencies, she said. But HCBS sees an inherent conflict of interest in providers making decisions about the services they themselves furnish, to the possible detriment of the individualized goals of the client.

Zanchi said some states use third-party case management and others have state employees do the job, with a “firewall” between them and the fiscal arm of state government.  In Rhode Island, changes in case management won’t come until 2018, she said.

She also told family members that the state would explore expanding the options for residential care, an issue of particular concern to older parents in light of a virtual freeze on group home admissions. HCBS expects states will move away from group home residential care.

After the meeting, Zanchi was asked how changes in practice brought about by the new regulations would be funded.

“When we figure out what it (the service system) would look like, then we need to figure out the funding for it,” she said.

During the forum, Dottie Darcy, the mother of an adult with developmental disabilities, wondered aloud how officials would “develop a system, without money, to account for the needs of all the people. At some point funding has to be addressed,” she said.

“I think it’s outrageous” that service providers “can’t keep workers” because they can’t pay enough, Darcy said.

She lamented a lack of organized advocacy with members of the General Assembly on behalf of individuals with developmental disabilities.

Claire Rosenbaum, a member of the Rhode Island Developmental Disabilities Council, said it is in the process of trying to revive its family organization to do exactly the kind of work Darcy described, “but it’s not there yet.”

The first two sessions on “Person-Centered Thinking and Planning” will be Wednesday, May 10, from 10 a.m. to noon and from 6 p.m. to 8 p.m., at the Sherlock Center on Disabilities on the campus of Rhode Island College, 600 Mount Pleasant Ave., Providence. These meetings will be of particular interest to families who direct their own programs of services for family members, but all sessions in the series are open to the public.

Those wishing to attend should RSVP with Claire Rosenbaum by May 8 at 401-456-4732 or crosenbaum@ric.edu