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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

• Career development and transition planning

• Trial work experiences

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

• Interagency coordination

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

‘Culture Of Low Expectations’

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

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

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

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

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

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

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

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

Systemic Improvements Cited

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

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

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

Some Difficulty In Compliance Noted

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

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

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

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

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

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

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

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

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

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

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

RI Faces Uphill Climb Halfway Through DD Consent Decree Implementation

Bar graph on employment targets 60-30-19.JPG

Bar graph from RI’s latest report to federal court monitor indicates RI is on track to meet one of three categories of employment targets in 2019. “Youth Exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

By Gina Macris

Halfway through Rhode Island’s decade-long agreement with the federal government to ensure that adults with developmental disabilities can work and enjoy leisure time in the larger community:

  • Rhode Island has linked 38 percent of its intellectually challenged residents to acceptable jobs, prompting a federal monitor to warn that it needs to step up its game

  • Service providers argue that continued progress will take a larger financial investment than the state is making

  • Success stories abound but some families remain skeptical about whether the changes will ever work for their relatives.

Five years and three months after Rhode Island signed a federal consent decree to help adults with developmental disabilities get regular jobs and lead regular lives in their communities, 857 people have found employment. Yet, 1,398 others are still waiting for the right job match or for the services they need to prepare for work.

The pace of adding individuals to the employed category has slowed dramatically. Only 37 individuals were matched with jobs during the first two quarters of the current year. To meet its overall employment target for 2019, the state will have to find suitable job placements for 199 more adults. That would require a pace in the second half of the year that is five times faster than the first half.

Though the federal consent decree was signed in 2014, meaningful efforts to comply with its terms did not get underway until two years later, when a federal judge threatened to hold Rhode Island in contempt and levy fines if it did not take numerous and precise steps to begin compliance in a systematic way. At that point, state officials were struggling even to come up with an accurate count of the number of individuals protected by the consent decree, so inadequate was its data collection.

The active census of the consent decree population has grown since 2016, when the judge ordered the state to improve its record-keeping and the monitor forced the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Rhode Island Department of Education (RIDE) to look again at special education students who might be eligible for adult services.

The most recent figures show that there are 3,764 intellectually challenged adults active either with BHDDH or RIDE who covered by the consent decree.

Of that total, 211 were employed in the community prior to the consent decree. Some have signaled they don’t want to work, either because they are of retirement age or for other reasons. Nearly 1,200 others are still in school and not yet seeking jobs.

Of the 2,255 adults who must be offered employment over the life of the consent decree, 38 percent have landed jobs.

The figures are re-calculated every three months.

state's employment chart as of 6-30-19.JPG

Employment data from the state’s report to the consent decree monitor as of June 30, 2019. broken down by categories of persons who must be offered jobs. “Youth exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

Rhode Island agreed to overhaul its services for the developmentally disabled population after an investigation by the U.S. Department of Justice found the state’s over-reliance on segregated sheltered workshops and day care centers violated the integration mandate of the Americans With Disabilities Act.

People with disabilities have the civil right to the supports and services they need to live as part of their communities to the extent that it is therapeutically appropriate, the U.S. Supreme Court said in the Olmstead decision of 1999, which upheld the integration mandate. In other words, integration should be the norm, not the exception.

Some people couldn’t wait to get out of sheltered workshops when the consent decree was signed and quickly found jobs in the community with a little bit of assistance. But some families with sons and daughters who have more complex needs saw sheltered workshops close without any transition plan. For some of them, the consent decree continues to represent a sense of loss.

At a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities (DDD), and Brian Gosselin, the state’s consent decree coordinator, had just finished applauding the successes of those who have found jobs or are on their way to shaping their careers, when Trudy Chartier spoke up on behalf of her daughter.

Trudy Chartier * all photos by Anne Peters

Trudy Chartier * all photos by Anne Peters

Her daughter is 55, deaf, has intellectual and behavioral problems and uses a wheelchair, Chartier said. She wants a job in the community and she’s been looking for five years.

Her daughter was in a sheltered workshop for a while, Chartier said, and “she loved it.”

“She didn’t care about making $2 an hour,” her mother said, and she made friends there. Now, she said her daughter “is not getting anywhere” and is “so dissatisfied.”

At the age of 80, Chartier said, she doesn’t have the energy she once had to help her daughter change things.

Later, Douglas Porch sounded a similar concern. “I can understand that the idea is to get them into the community, but what it’s actually done is destroyed my daughter’s community, because you’ve taken away her friends.”

“She’s in a group home, with nothing for her to do,” Porch said.

Zanchi, the DDD director, said that the consent decree certainly has changed the way people receive services. The intent is “not to isolate, but the opposite, to build communities,” she said.

“If that’s not working and it sounds like it’s not, we need to hear about that,” Zanchi said. “We can help you so that she can engage with her peers more effectively.”

Another parent, Greg Mroczek, also spoke up. “In terms of all the possible models, isn’t a sheltered workshop for a segment of the DD population the best possible model? Isn’t that what people are saying? It worked for my daughter as well,” he said, and nothing has replaced it.

Kerri Zanchi

Kerri Zanchi

He asked whether the sheltered workshop is “off the table” in “any way, shape or form” in Rhode Island.

Zanchi talked about the state’s Employment First policy, which values full integration and“investing in the skills and talent of every person we support.”

“We know that individuals of all abilities have had successful employment outcomes. We also know that employment is not necessarily what everybody wants,” Zanchi said.

“Striking that balance is a challenge,” she said. The state’s developmental disability service system and and its partners are working hard to help meet people’s needs, Zanchi said.

Rebecca Boss

Rebecca Boss

When Zanchi was hired at the start of 2017, she was the first professional in developmental disability services to run the Division of Developmental Disabilities in about a decade.

Zanchi and Rebecca Boss, the BHDDH director, have improved the bureaucratic infrastructure to foster employment, professional development, quality control, and communications with families and consumers and the private agencies the department relies on to deliver services that will meet the monitor’s standards.

For example, the developmental disabilities staff has been expanded and reorganized. An electronic data management system has been introduced. BHDDH invited providers and representatives of the community to the table to overhaul regulations governing the operations of the service providers and has maintained a quality assurance advisory council, with community representation.

Broadly speaking, the leadership of Boss and Zanchi has set the tone for a philosophical shift in which employment is part of a long-range campaign to open the door to self-determination for adults with developmental disabilities – in keeping with the mandates of the consent decree. The state’s last sheltered workshop closed in 2018.

The consent decree also has fostered a revival of advocacy in the community and the legislature, where there had been a vacuum once an older generation of leaders had passed on.

So why isn’t the glass half full at the halfway point in the decade-long life of the consent decree? In a word, money.

Advocates say a central issue is the lack of an investment in the ability of the system to reach more people with the array of services that will open doors and enable them to find their places in the community.

To satisfy the requirements of the consent decree, the state relies on the efforts of private agencies that provide the actual direct services.

The federal monitor in the consent decree case, Charles Moseley, has asked the state to get to the bottom of what he described as a lack of “capacity” on the part of these private agencies to take on new clients.

BHDDH is circling around the funding issue with an outside review of the fee-for-service rate structure governing developmental disability services. That analysis is designed to expand the analytical capabilities BHDDH, leaving the policy decisions to the department leadership.

Advocates for adults with developmental disabilities, most prominently state Senator Louis DiPalma, D-Middletown, say there must be a public discussion about how much money it will take in the long run to complete the transformation from sheltered workshops and day care centers into one that assists people in finding their way in life. DiPalma chairs a special legislative commission studying the current fee-for-service system.

In the meantime, DDD is soliciting a proposal for the third iteration of its performance-based supported employment program, which is designed to focus on people who have never held a job. This group includes young people completing high school and seeking adult services for the first time, as well as adults who face multiple challenges and would find it difficult to fill the standard job descriptions put out by employers.

The new Person-Centered Supported Employment Performance Program (PCSEPP 3.0) is expected to launch Jan.1 with an emphasis on “customized” employment, tailored to match an individual’s strengths and interests with the needs of an employer who is willing to carve up the work at hand in a non-traditional way.

The concept of customization is not new.

In Rhode Island, a few adults with developmental disabilities have had customized employment for many years, most often arranged with the support of their families, who hire staff and direct a unique array of services for them rather than relying on an agency.

In addition, the Rhode Island Council on Developmental Disabilities promotes self-employment, a form of customization, through a business incubator created with the help of the Real Pathways RI Project sponsored by the Governor’s Workforce Board.

The DD Council highlights the products and services of self-employed adults with developmental disabilities as part of its annual holiday shopping event, Small Business Saturday Shop RI, scheduled this year for Nov. 30 at the Crowne Plaza Hotel in Warwick.

The U.S. Department of Labor defines customized employment as a “flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized determination of the strengths, needs, and interests of the person with a disability, and is also designed to meet the specific needs of the employer.”

Since the supported employment program started in 2017, providers have expressed concerns that, because it is tied to the fee-for-service reimbursement system, it does pay for initial investments the agencies might have to make to participate.

Those concerns persisted during a meeting between DDD officials and potential applicants for the customized employment program in mid July. At the providers’ request, DDD has extended the application deadline to October 4.

Womazetta Jones

Womazetta Jones

The state’s new Secretary of Health and Human Services, Womazetta Jones, has promised to be a careful listener to the concerns of the developmental disability community.

Speaking at the recent public forum, after just eight days on the job, Jones acknowledged the state’s efforts to improve services for adults with developmental disabilities but also cautioned against complacency.

Even though the state has substantially increased funding for developmental disabilities in recent years and gained “stable and effective leadership” at BHDDH, “that doesn’t mean anyone in this room or state government is content with recent progress,” she said.

“The moment we think we don’t have more to do, is the moment we have lost our way,” Jones said, signaling that she is available for further discussion of issues affecting people with developmental disabilities.

RI DD Plans For Electronic Visit Verification and "Health Homes" To Be Aired Next Week

By Gina Macris

(This article has been updated.)

Plans for two Important changes in the system that provides services for Rhode Islanders with developmental disabilities will be aired at two important public meetings Aug. 27 and Aug. 28.

On Tuesday, Aug. 27, officials of the state Division of Developmental Disabilities will discuss electronic visit verification (EVV) for services delivered in the homes of consumers and families who direct their own programs.

At that meeting, officials also plan to discuss how consumers who self-direct can gain better access to supported employment services. Meanwhile, a panel of individuals with experience in self-direction of individual programs will offer insight to those who might be considering managing their own programs, according to a BHDDH spokesman.

On Wednesday, Aug. 28, officials will address their proposal to create an independent entity called a “Health Home” to provide case management for state-funded services. Until now, the state has funded and managed these services. All states are required by the Centers for Medicare and Medicaid Services to separate funding from case management to avoid conflicts of interest.

Both meetings will be in the Warwick Public Library, 600 Sandy Lane, Warwick. The Aug. 27 meeting for so-called “self-directed” families will run from 10 to 11:30 a.m. The Aug. 28 meeting on Health Homes, hosted by the advocacy group RI FORCE, will run from 4 to 6 p.m.

RI DD Direct Care Raises To Kick In Oct. 1

By Gina Macris

Direct care workers employed by private agencies serving persons with developmental disabilities in Rhode Island will have to wait until October to receive raises provided in the state budget that took effect last month.

But when the raises do show up in their paychecks, they’ll be for the full amount – 80 to 85 cents an hour, according to state officials.

A spokesman for Nicholas A. Mattiello, speaker of the House of Representatives, had suggested that raises proposed by Governor Gina Raimondo in her budget plan, and enacted by the legislature, might take effect July 1.

An additional pay boost added in the waning days of the General Assembly session would follow on Oct. 1, the speaker’s aide had said.

But state officials now say that both raises will take effect Oct. 1, allowing time for the state to work with the federal government to make technical changes required in the Medicaid program to incorporate the wage increases.

Direct care workers employed by developmental disability service organizations will receive an estimated 80 to 85-cent hourly pay raise effective Oct. 1, according to state officials.

The General Assembly set aside a total of $9.5 million in federal and state Medicaid funds - including $4.5 million from the state budget- for raises to direct care workers. That total consists of $6.2 million proposed by Governor Gina Raimondo in her original budget plan and an additional $3.3 million added by the House in the waning days of the 2019 session of the General Assembly.

At that time, Mattiello’s spokesman said that the pay increase proposed by the Governor would become effective July 1 and the amount added by the House would kick in Oct. 1.

But the final budget language does not specify an effective date.

In a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities, said that because the pay raise involves federal Medicaid funds, the state must work with the Centers for Medicare and Medicaid Services to make changes to the federally-authorized reimbursement rate the state pays to privately-run service providers for front-line staff.

Unlike previous pay increases enacted by the legislature, the $9.5 million investment in direct care wages will not extend to supervisors, job coaches and other specialists working with adults with developmental disabilities, state officials have said.

Raising the pay of direct care workers is considered a critical issue in employers’ ability to recruit and retain staff at a time when the state relies on some three dozen privately-run agencies to implement the requirements of a 2014 federal civil rights consent decree. Drawing its authority from the 1999 Olmstead decision of the U.S. Supreme Court, the consent decree requires the state to change to an integrated, community-based model of daytime services by 2024, with an emphasis on employment.

According to a budget analysis by the House Fiscal Office, this year’s raises will boost the pay of direct care workers to about $13.00 an hour. But the state and private providers historically have differed on how far raises will go, because the state allows much less for employee benefits and other employment-related overhead than providers say those expenses actually cost.

A trade association of two thirds of private providers in the state says that on average, entry-level employee make about $11.44 an hour, while more experienced direct care workers make an average of about $12.50 an hour. The Connecticut legislature enacted a minimum wage of $14.75 for developmental disability and personal care workers in 2018. Massachusetts pays $15 an hour for personal care workers, a category which includes many who support adults with developmental disabilities.

NESCSO Will Not Offer “Magic Number” on RI DD Rate Review, Leaving Decisions To BHDDH

Rick Jacobsen *** All Photos By Anne Peters

Rick Jacobsen *** All Photos By Anne Peters

By Gina Macris

A consultant to a regional consortium reviewing Rhode Island’s developmental disability service system outlined the scope of the group’s work and time line to a July 30 meeting of a special legislative commission.

The consultant also disclosed some preliminary findings about “Project Sustainability,” the fee-for-service reimbursement system also being studied by the General Assembly’s commission. No one appeared surprised by the early findings.

For example, the developmental disabilities caseload has had a compounded annual growth rate of 3 percent in the last five years, from 3,744 to a current total of 4,297.

And the data shows that the private agencies that provide most of the direct services – and bear the brunt of the work necessary to comply with a federal civil rights agreement - operate on precarious financial margins.

The presentation to the Project Sustainability Commission was made by consultant Rick Jacobsen and his boss, Elena Nicolella, executive director of the New England States Consortium Systems Organization (NESCSO), a non-profit group that provides analysis in the fields of health and human services to five states. The meeting was held at the Arnold Conference Center at the Eleanor Slater Hospital.

Nicolella and Jacobsen encountered pushback when they explained the role defined for NESCSO by the state Department Behavioral Healthcare, Developmental Disabilities and Hospitals.(BHDDH).

NESCSO will present options to BHDDH for system improvements toward the project goal of maximizing “opportunities for people to fully participate in their community,” according to a Powerpoint presentation that accompanied the talk. But it won’t deliver an independent recommendation or “magic number” on costs, Jacobsen and Nicolella said.

Tom Kane, CEO of AccessPoint RI, a private provider, said long experience in system-wide reform has taught him that the approach chosen by BHDDH is doomed to fail unless the effort also states the true cost of evolving to an integrated community-based model.

L. to R.: Andrew McQuaide, Kim Einloth, Tom Kane

L. to R.: Andrew McQuaide, Kim Einloth, Tom Kane

There has been no “tolerance” for even “having a (public) discussion about the cost of investing in the change process,” said Kane. “If you shift funds in an underfunded system, it’s not going to work. It’s just going to make the hole deeper,” he said.

In the 1980s and 1990s, when advocates pushed to close the Ladd School, the state’s only institution for people with developmental disabilities, “there was a community behind us, and we put an investment in the system in order to make that change happen, and it was dramatic change,” Kane said.

But there was no investment in changing the system in Project Sustainability, enacted in 2011, Kane said.

While the healthcare consultants Burns & Associates recommended an investment that was millions of dollars more than was being spent, Kane said, that number was never made public or discussed in the General Assembly. “What we ended up with was millions of dollars cut,” he said.

A few years later, when the demand grew for more community-based services, those reimbursement rates increased, but rates for center-based care decreased, despite the fact that providers continued to have the same fixed costs, Kane said.

The history of Project Sustainability has prompted a certain amount of “agida” among service providers regarding NESCSO’s work, said Andrew McQuaide, a Commission member.

“Having gone through a similar process and getting an end product that turned the system around and took us backward,”he said, providers are nervous that “we could go through a very similar process and come up with a poor product.”

He said his remarks did not reflect in any way on the current administration. Rebecca Boss, the BHDDH director, and Kerri Zanchi, the director of the Division of Developmental Disabilities, are both commission members and attended the meeting.

McQuaide and A. Anthony Antosh, another commission member, both urged Boss to make public all the data and reports produced by NESCSO, whose contract runs through June, 2020.

Antosh said there ought to be a direct relationship between the goals of the rate review and the recommendations of the commission. Commission members have submitted individual recommendations, which all advocate for the self-determination of adults with developmental disabilities. Their work will be synthesized into a final report, according to the commission chairman, Sen. Louis DiPalma, D-Middletown.

The manner in which NESCSO’s work will be shared with the public is under discussion, Boss said. She and Zanchi said they didn’t think it would be the best use of everyone’s time if the public discussion got bogged down in the minutia of the analytics at each stage in the process.

“We don’t want to be pulled off course but be mindful of the project as a whole,” Zanchi said.

Jacobsen and Nicolella said that NESCSO intends to produce data to enable BHDDH to make both near-term changes and longer-term reforms.

Preliminarily analysis of the audited financial statements of 16 private provider organizations confirms that the system is operating on a very close financial margin, said Jacobsen.

Elena Nicolella

Elena Nicolella

That’s not unusual, he said. Human services agencies across the country are in similar positions. At the same time, the tight finances mean the agencies may tend to be averse to risks like investing in system change or taking on new clients, Jacobsen said.

Jacobsen presented a preliminary analysis of audited financial statements from 16 provider agencies over the last two years, with tables organized according to the number of fiscal reports. The agencies were not identified.

For example, out of a total of 27 audited financial statements, 15 showed deficits and 11 showed surpluses. Of the 11 surpluses, 6 were less than 3 percent of revenues.

In another table summarizing 24 financial statements, 12 of them showed less than a month’s cash on hand at the end of the fiscal year.

And a third table on liquidity said that of a total 24 financial statements, only 4 had working capital to carry their agencies longer than 2 months. At the other extreme, 7 statements said their agencies had no working capital or were lacking up to two months’ worth at the end of the fiscal year.

Jaccobsen said the state has made advance payments to some struggling agencies, but these advances have been carried as liabilities on the books.

Commission members said that for some organizations with multiple sources of income, the agency-wide audited statements do not give an accurate picture of the fiscal margins in developmental disabilities.

Regina Hayes, CEO of Spurwink RI, and Peter Quattromani, CEO of United Cerebral Palsy, suggested that the financial picture is worse than it looked in Jacobsen’s tables and asked him to go back and look only at the income and expenses related to developmental disabilities.

Jacobsen said NESCSO will spend the entire month of August listening to providers. Engagement with consumers and their families is scheduled for September.

An analysis of earnings figures from the Bureau of Labor Statistics for May, 2018 indicated that the wages for direct care workers in Rhode Island are close to the median in comparison to other states. That doesn’t mean that agencies can hire and retain employees, Jacobsen said.

Here too, Jacobsen was asked to look more closely at the figures.

Louis DiPalma and Rebecca Boss

Louis DiPalma and Rebecca Boss

The commission chairman, DiPalma, said the figures Jacobsen used didn’t account for a raise the Connecticut legislature gave to all its developmental disability direct care workers to a minimum of $14.75. In Massachusetts, 30,000 people working as personal care attendants, including many working with adults with developmental disabilities, make $15 an hour, DiPalma said. And the figures Rhode Island reports to the Bureau of Labor Statistics put developmental disability workers in the same category as home health aides, who make more, DiPalma said. According to a trade association representing two thirds of private providers in Rhode Island, entry-level direct care workers make an average of $11.44 an hour. (They are soon to get raises.)

When Jacobsen mentioned that NESCSO plans to compare Rhode Island’s developmental disability services to those in other states, Kane, the AccessPoint CEO, said the consultants must make sure to include the amounts the other states spend on institutional care.

A comparison of community-based services among states does not yield a true picture of total state spending on developmental disabilities, since most other states also have institutions, Kane said. But Rhode Islanders who in other states would be institutionalized live in the community in Rhode Island instead, said Kane.

Jacobsen also presented other preliminary statistics:

  • There has been a 15 percent compounded increase in the number of people who direct their own programs in the last five years. NECSCO will look further at whether the increase has occurred by choice or whether it results from individuals and families being unable to find suitable services from agencies. “I suspect it’s a mix of both,” Jacobsen said.

  • Of a total of nearly $216.2 million in reimbursement claims paid by the state in the 2018 fiscal year, 51.4 percent was for residential expenses and 48.6 percent was for daytime services, case management, respite care, and independent living or family supports.

· In the category of daytime services, 4.2 percent, or nearly $4.5 million, was spent for employment-related and pre-vocational activities. Increasing employment is one of the main goals of the consent decree.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Read Moseley’s report here.

(This article has been updated.)

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“An excellent question,” Moseley said.

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

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

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

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

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

RI House Gives Extra Bump To Pay Of Front Line DD Workers As Budget Deliberations Near End

By Gina Macris

The Rhode Island House has added a total of $9.6 million in federal-state Medicaid funding to boost the pay of direct care workers for adults with developmental disabilities in the state budget for the fiscal year beginning July 1.

The increase, awaiting approval by the Senate, represents the largest single-year investment in wages since drastic cuts were made in 2011. In 2016, the legislature earmarked $5 million for a rate hike, and the next year it added $6.1 million.

But the rates for Rhode Island’s direct care workers still lag behind those of neighboring Connecticut and Massachusetts.

This year’s wage hike is was part of an overall $296.9 million allocation for developmental disabilities, which includes $13 million in federal Medicaid reimbursement to create a third-party case management initiative called a Health Home.

In an unusual Saturday session June 22, the House also addressed a shortfall in the current developmental disabilities budget, adding $2.9 million in supplemental funding.

Developmental disability services encompass both the private system serving about 4,000 clients and a state-operated network of group homes for about 125 individuals, accounting for more than half the spending in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). The House-authorized spending cap for BHDDH in the next budget is $463.2 million.

A spokesman for House Speaker Nicholas A. Mattiello explained a floor amendment that raised the total earmarked for a wage increase in Governor Gina Raimondo’s budget from $6.4 million to $9.6 million.

Larry Berman said the governor’s $6.4 million, including $3 million in state funding and $3.4 million in federal reimbursements, will mean a 41-cent raise to the hourly rate for direct support workers on July 1. The hourly rate, which he put at an average of $12.27, would rise to $12.68, Berman said.

The additional $3.2 million in the floor amendment, including $1.5 in state revenue, will be applied Oct. 1, triggering an additional wage hike of 41 cents an hour, for a total hourly rate of $13.09 during the last nine months of the fiscal year, Berman said.

In the past, increases for direct care workers have meant that supervisors and other support personnel have also received raises. But Berman confirmed that this year, the allocation earmarked for pay bumps apply only to front-line caregivers. In all, about 4,000 work in the private sector in the field of developmental disability services.

Berman’s figures refer to the basic hourly wage rate in the BHDDH reimbursement model for private providers, but that doesn’t mean each direct care worker will get the increase he cited.

Many variables exist in the way each of the providers figures out how much to pay workers and how much to set aside for benefits and other employer-related expenses. All that means that the amount of the actual wage hikes will vary.

In the past, the state and the private providers have differed on how far a rate hike will go.

In a statement, Mattiello took credit for redirecting additional funds to direct care workers.

“When about $1 million was identified as available in the budget, I suggested it go to those workers who are providing outstanding care to the developmentally disabled community. They deserve this rate increase.”

The Community Provider Network of Rhode Island, (CPNRI) a trade association of about two dozen providers, posted its thanks on Facebook:

“CPNRI is pleased to see the commitment of the Speaker, Senate President and Governor and all the Representatives and Senators who have supported increased wages for DD workers in Rhode Island in the 2020 budget. This investment not only will raise wages for this invaluable workforce, it supports individuals with intellectual and developmental disabilities to lead meaningful lives in our communities. Thank you to all who have prioritized this workforce.”

The wage increase is assured passage in the Senate, where developmental disability services have the support of the leadership, including Senate President Dominick J. Ruggerio, William J. Conley, Jr., Chairman of the Senate Finance Committee; and Sen. LouisA. DiPalma, first vice-chairman of the Senate Finance Committee.

The extra push in funding occurred just as Mattiello sought to tamp down a controversy involving a Cranston chiropractor, who was to receive a $1 million authorization to bill the state for services for an unproven neurological treatment for traumatic head injury and other disorders that failed to qualify for federal Medicaid reimbursement..

On June 20, Mattiello announced he would pull the $1 million in funding from Victor Pedro, because the issue had become too controversial and he wanted to avoid a lengthy floor battle, even though he still supported the chiropractor.

Berman said most of the last-minute $1.5 million-increase in worker wages came from the allocation that Mattiello pulled from the chiropractor, along with funds from various other accounts.

Spending for already-established developmental disability programs and services from all revenue sources in the next fiscal year would be capped at $284 million – about $12.3 million more than originally approved for the current fiscal year. Most of that figure comes from the federal-state Medicaid program.

Meanwhile, the House approved a revised developmental disabilities budget of slightly over $274.6 million for the current fiscal year, which is $2.9 million more than the $271.7 million the General Assembly enacted a year ago.

The revised figure includes about $1.7 million in state revenue that represents an adjustment for an audit finding that the state was incorrectly leveraging federal Medicaid money to pay for fire code upgrades in group homes and other facilities serving adults with developmental disabilities, Berman said. Capital projects are now all assigned to the Department of Administration, he said.

Without supplemental funding and savings in other BHDDH accounts, the cost of services in the privately-run developmental disability system would have exceeded the amount the General Assembly originally allocated by about $3.8 million in General revenue.

A third-quarter spending report prepared by BHDDH said that the total state share of Medicaid-funded direct services in the private system is projected at about $111.4 million by June 30. The enacted budget for the current fiscal year allows $107.6 million in that category, but the supplemental funding recommended by the Governor and approved by the House reduces the projected shortfall in state funds to about $152,000, when combined with savings in other accounts.

In the third-quarter spending report for the current fiscal year, BHDDH officials project about a 1.5 percent increase in overall caseload growth and a $1.5 million increase in supplemental funding to clients who successfully appeal the individual amounts allocated for their services.

Counting all the Governor’s proposed supplemental funding for BHDDH in all three divisions, as well as savings in some budget line items, the department projected a year-end surplus of about $438,000 as of March 31.

RI Budget Controversy Touching House Speaker Yields Extra Money For DD Worker Raises

By Gina Macris

Bowing to intense political pressure, Rhode Island House Speaker Nicholas A. Mattiello said June 20 that he will pull a $1-million budget line item for an unproven neurological service that doesn’t qualify for Medicaid funding and reallocate most of the money to raises for those who care for adults with developmental disabilities.

The budget, passed by the House Finance Committee June 13, now contains $3 million in state funding and $3.4 million in federal Medicaid funding – a total of $6.4 million – to raise the pay of direct care workers, who earn significantly less than those doing the same job in Massachusetts and Connecticut.

On the Tara Granahan morning show on WPRO radio, Mattiello said he continues to support chiropractor Victor Pedro of Cranston, who practices what he calls Cortical Integrative Therapy (CIT). The Speaker said he is removing the $1 million from the proposed budget “only because it’s politically controversial.”

“Do I think that’s the right thing to do? I’m not convinced of that, but we’re going to pull it because the issue has become very controversial,” Mattiello told Granahan.

Mattiello’s spokesman, Larry Berman, said later in the day that most of the $1 million allocation for CIT will be added to the raises for direct care workers because “Speaker Mattiello believes these are some of the hardest-working and dedicated employees in the state.”

The General Assembly’s leading champion of adults with developmental disabilities, Sen. Louis DiPalma, D-Middletown, tweeted his appreciation for Mattiello’s decision to re-direct the funds to the wage raises. “THANK YOU VERY MUCH!!!!! It is needed, most welcomed and greatly appreciated!!!!!”

Even if all $1 million were added to a line item set aside in the budget for the raises, the total would still be far below the $28.5 million advocates have sought in state funding to stabilize the workforce, plagued by high turnover and a high job vacancy rate.

Berman could not say exactly how much will go to the raises. The breakdown will be available when the full House convenes June 21 to consider the state’s $9.9 billion- budget for the fiscal year which begins July 1, he said.

Any addition of state funds to worker pay will generate about 52 cents on the dollar in federal Medicaid reimbursement, in effect doubling the amount available.

Without the extra allocation, the proposed budget’s $6.4 million for wage hikes would add an average of 34 to 44 cents an hour to the pay of about 4000 direct care workers. Private providers and state government differ on their estimates of how far the money will go.

Entry-level direct care workers make an average of $11.44 an hour, according to a trade association of service providers, while more experienced colleagues are paid an average of $12.50 an hour. The Connecticut legislature enacted a minimum wage of $14.75 for personal care workers in 2018, and Massachusetts pays about $15 an hour.

On the morning talk show, Mattiello defended the chiropractor, who has donated to several political campaigns, including his own, even while he explained why he is pulling the money.

“I’m going to have a terrible debate on the (House) floor. So politics is what it is, and I’m going to do something that I should not do,” Mattiello said.

“I will continue to support the doctor because I think he brings a unique and special treatment to a lot of kids and folks who have no place else to go.”

While Mattiello said Pedro has had “great success,” the federal Medicaid program has turned down the state’s request for federal reimbursement for the treatments because of a lack of scientific evidence that they are effective.

Mattiello said he met Pedro in connection with his law practice before he was elected to the General Assembly and was impressed by the testimonials of his patients.

One of Pedro’s patients was the late father of former Rep. Frank Montanaro, Jr., Mattiello said in the radio interview. Montanaro now works as executive director of the financial and administrative office of the General Assembly.

The first budget allocation for CIT dates back more than a decade. Since Governor Gina Raimondo took office in 2015, her administration has tried to cut the CIT allocation out of the budget, without success.

Mattiello’s latest attempt to restore funding for Pedro that had been cut by the Raimondo administration caught the eye of blogger Steve Ahlquist of Uprise RI. His investigative article sparked the outrage of the state Republican Party and numerous other critics of the Speaker.

Collaboration Needed to Find Jobs, Solve Transportation Problems, For People With DD

By Gina Macris

For people with developmental disabilities, reliable public transportation – or the lack of it – can mean the difference between accepting a job offer and staying home.

A Coventry, RI man who had a chance to work at a Home Depot near his home faced that dilemma when he learned that the state’s paratransit system for people with disabilities could not go into the shopping center where the store is located.

To solve the transportation problem, the man’s family and his job developer, Rory Carmody, Director of Program Services at AccessPoint RI, pitch in to drive him to and from work, said Carmody’s boss, Tom Kane. But the hours the man can work are limited to the times Carmody and the man’s family are available for drop-off and pick-up, said Kane.

Kane, the CEO of AccessPoint, shared the story in a conversation after a June 18 meeting of a special legislative commission studying Project Sustainability, the state’s fee-for-service reimbursement system for private services for adults with developmental disabilities.

L to R: Scott Jensen and Scott Avedesian

L to R: Scott Jensen and Scott Avedesian

The session focused on the intersection of jobs and transportation, featuring remarks from three speakers:

· Scott Avedesian, CEO of the Rhode Island Public Transit Authority (RIPTA)

· Scott Jensen, Director of the Department of Labor and Training (DLT)

· Robert Kalaskowski, Chief of Policy and Planning for the Governor’s Workforce Board.

The example of the Coventry man illustrates the challenges of relying on the paratransit program, which operates only along corridors that mimic RIPTA’s regular bus routes. The shared RIde program for people with disabilities may drop off and pick up at sites no more than three-quarters of a mile outside a regular bus route, according to the RIPTA website.

Because RIPTA doesn’t send regular buses to Little Compton or Foster, the RIde option for residents with disabilities is not available either, said Sen. Louis DiPalma, D-Middletown. And, he added, there’s only one public transit stop in Tiverton.

Recently, the directors of the agencies responsible for services for the elderly and those with intellectual and developmental disabilities accompanied Avedesian on a paratransit run that picked up four individuals, one of them in a wheelchair, and took them to their various destinations.

Rebecca Boss, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said it was a “really good experience for everyone to see the hands-on, labor-intensive type of transit that we perform.”

For the officials, the experience took two and a half hours, from the time the van left the RIPTA garage to get the first client until the time it returned, Avedesian and Boss agreed. It happened to be a day with a lot of traffic, Avedesian added.

Even though the clients weren’t on the van all that time, Kate Sherlock, a commission member, said the run took too long. “I cry when I have to be in the car for two hours,” she said.

Avedesian said that for him, the biggest takeaway from the experience was the need for matching the locations of clients and available jobs to minimize travel time, “so that we’re not taking someone all the way from Woonsocket to Newport.”

Avedesian said he’s impressed by the “intensive amount of time, money and labor involved in moving one person from one end of the state to the other.”

DiPalma said the average cost of a paratransit run is $34, but the program is reimbursed roughly $8 to $14 of that cost, depending on the intensity of the client’s disability. He said the reimbursements are Medicaid-authorized federal and state transportation dollars assigned to BHDDH clients to cover travel. No public transit system in the country is financially self-sufficient, DiPalma noted.

DiPalma has convened an informal group of representatives of public and private agencies who are interested in solving the transportation problems of people with disabilities. The agencies include BHDDH , DLT, RIPTA, the Community Provider Network of Rhode Island, the Providence Chamber of Commerce, the office of U.S. Rep. James Langevin, and others, he said.

Moving forward, transportation must become more malleable to the needs of the people, he said. If someone lives in Glocester and has a job in Newport, that person may be able to get work closer to home, but “if that’s the job they have, that’s the job they have,” DiPalma said.

Jensen

Jensen

Jensen of DLT offered a different way of looking at the transportation problem.

If people with developmental disabilities can be viewed as a source of excellent workers, rather than a population needing support, a stronger argument can be made for investing more in transportation, because of the value this group brings to the economy, he said.

“The company will be receiving value, the person will be paying income tax and can buy more things than they otherwise would,” Jensen said.

He said “coalitions of the willing” are “trying to find those positions where companies recognize the value of people with developmental disabilities. That takes time.”

He said a “handful” of companies, like Home Depot and CVS, have made the “moral choice” to employ individuals with developmental disabilities.

“We want to also help make this a practical choice” for many businesses, Jensen said, by starting with employers’ demands and finding the right match in the labor force - “the right person, in the right place, at the right time, and with the right skill set.”

BHDDH officials recently put the employment rate for adults with developmental disabilities at 29 percent.

Kalaskowski

Kalaskowski

Kalaskowski, of the Governor’s Workforce Board, said the state is promoting that strategy in the Real Pathways program, part of the broader Real Jobs initiative.

In Real Pathways, DLT works with private providers of employment-related services for adults with developmental disabilities, promoting collaboration among job developers to find the best match between the employer’s demand and worker skills.

A job developer working alone may not have just the right client and face the choice of either forcing a match that won’t work out in the long run or letting a relationship with an employer die, Kalaskowski said. In a network of job developers, one may pass along a lead to another and they will return the favor down the line, he said.

Andrew McQuaide, a senior director with Perspectives Corporation, said Jensen and his team deserve “a lot of credit” for fostering a culture of collaboration.

McQuaide recalled how one man with developmental disabilities connected with a training opportunity offered by the Rhode Island Nursery and Landscape Association because both he and AccessPoint’s Rory Carmody “spread the word.”

Then, when a job with a landscaping company opened up, someone in the community who knew the man from the RINLA training recommended him for the position. The man got the job “not because DLT put any dollars forward,” McQuaide said, but because of the “culture and the connections” that DLT promoted.

Boss, the BHDDH director, said she is excited about the collaboration with DLT. Tracey Cunningham, the director of employment services, and other dedicated officials at BHDDH do a good job in helping adults with developmental disabilities find work, but the staff at DLT “lives, eats and breathes” jobs, she said.

The next meeting of the Project Sustainability commission, set for June 25, has been cancelled because of likely schedule conflicts as the General Assembly wraps up its 2019 session, DiPalma said. He said the meeting will be re-scheduled sometime in July.

RI “Not Far” From Institutional System Of DD Services, Antosh Tells Legislative Commission

A. Anthony Antosh

A. Anthony Antosh

By Gina Macris

Other than moving people out of institutional living with the closing of the Ladd School in 1994, Rhode Island hasn’t made life appreciably better for adults with developmental disabilities, according to state’s most prominent academic in the field.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said that every week he gets calls from parents who say how “complicated it has gotten” to deal with state-funded services and “how unstable the system is.”

“Our system is not institutional, but it’s not far from that,” Antosh said. He has been active as an educator and researcher in the field of developmental disabilities since the 1970s and was a plaintiff in a lawsuit that ultimately closed the Ladd School.

If the state transfers control of its services – even partially -- to the people who are served, “you begin to change what the system looks like,” he said. Individuals will become “more responsible for themselves.”

Antosh made the comments May 22 as a member of the Project Sustainability Commission, a special legislative commission studying the current state of developmental disability services. Antosh and other commissioners outlined their reform suggestions at the session.

He zeroed in on a requirement now in place that sets out ratios for staffing according to the degree to which a person is perceived to be disabled – a “naive notion” in his view. The ratios allow one-to-one or small group staffing only for the most challenged individuals and were designed for day care facilities or sheltered workshops.

The funding rule remains in place even though the state in April entered the sixth year of a ten-year agreement with the U.S. Department of Justice requiring it to change to an integrated, community-based system of care. The last sheltered workshop in Rhode Island closed last year.

Antosh said an alternative structure could be a community support team responsible for a certain number of people. The team would figure out how to arrange its time to meet the individual needs of its clients in the community.

DD Council Weighs In

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, also said that he wanted a system “driven by the person and the family.”

There is much talk about “person-centered planning,” he said, but “sometimes, the person is at the center and the other people are doing the planning.”

Nerney recommended that the person receiving services and the family take the lead in drawing up a plan for life in the community. They would be guided by an independent facilitator, not by someone who works for the state funding agency or a private service provider.

The individual and the family would have control over the budget assigned to them and would be able to hire whom they choose to provide paid supports.

Until recently, Nerney said, individuals and families who direct their own services were allowed to use the money allotted to them only to pay for support workers.

Those who choose to receive services from an agency should at least know how much money goes into each category of support, Nerney said.

Antosh, meanwhile, said that funding should be organized by function so that individuals and families have a clearer idea of its purpose.

The notion that plan-making and case management should be separated from the funding agency and the service provider is already embedded in federal Medicaid rules under the title of “conflict free case management.”

“Health Home” Merits Debated

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) wants to set up a Medicaid-funded “Health Home” as an independent planning and case management entity for persons with developmental disabilities.

But some commission members have wondered aloud whether a Health Home would be just another layer of bureaucracy.

And Nerney said most people don’t even like the term “conflict-free case management.”

Antosh agreed that “conflict-free case management” should be made simple. The state should have a list of trained independent facilitators, or “navigators,” as he referred to them, to help individuals and families develop plans and mediate any differences among those contributing to an individual plan.

Individuals and families should have a choice of managing their own services, signing up with an agency, or designing a customized combination of self-directed supports and agency-managed services, he said.

Tom Kane, Left, With Antosh

Tom Kane, Left, With Antosh

Tom Kane, who represented a service provider’s perspective, agreed that the people should be in control, with the services following their needs.

To lay the groundwork for real choice, the system should help adults with developmental disabilities “discover their options,” and providers should follow their lead in delivering services, said Kane, CEO of AccessPoint RI.

Kane recommended a concerted statewide marketing campaign aimed at employers that promotes adults with developmental disabilities as an enthusiastic and reliable workforce.

Several other recommendations from Kane echoed recurring issues among members of the commission including:

  • A need for funding that reflects the real costs of services, as well as salaries that will attract and retain talented employees. Recommendations that arise from the review of the funding model and rates that is now underway should be presented to the General Assembly “without edit,” Kane said, and should be used as the basis of funding a new system. He noted that the last review came up with recommendations which the legislature never used.

  • Concerns about a lack of housing options

  • A need for consumers’ access to technology to help them achieve the greatest independence possible.

A Call For A More Stable Funding Cycle

All the commission members, except Antosh, favor annualized budgets for individuals. Antosh said arrangements should be made in two-year increments for funding and services. He also said that there should be a single streamlined application process, no matter the source of the funding, which may come from BHDDH, the Office of Rehabilitative Services, or the Department of Labor and Training.

Families of youngsters deemed eligible for adult services while they are still in high school should also get a budget for exploratory activities, because they don’t know what choices are possible until they experience various options, he said.

The state now determines funding levels annually on paper but reserves the right to change the amount actually released for spending every three months – on a quarterly basis. Families and providers agree that the quarterly allocation - the only one like it in the nation – is a major impediment to the systematic planning necessary for a stable system of supports.

Kane provided some history on the quarterly allocations:

In 2010, he said, payments to private service providers ran over budget and the state told them their reimbursements would be cut for two months – one month retroactively – to make up the difference.

Some providers sued, Kane said, arguing that the state was still obliged to fulfill its contract with them. The providers won, but the next year, in 2011, BHDDH introduced quarterly allocations along with Project Sustainability, the fee-for-service system that significantly reduced reimbursements and is at the center of the commission’s deliberations.

Mental Health Services Lag

The issue of mental health received considerable attention, with Nerney recommending that the system develop and implement a variety of strategies to prevent crises or resolve them once they occur.

Nerney supported the idea of a mobile crisis unit that he said was suggested by Gloria Quinn, Executive Director of West Bay Residential Services, at the previous commission meeting May 6.

Quinn recommended convening a group to explore successful practices in supporting those with complex mental health and behavioral needs in the community, minimizing the need for excessive psychiatric hospitalization.

Rebecca Boss, the BHDDH executive director, and Kerri Zanchi, the Director of the Division of Developmental Disabilities, both indicated they are aware of a need for greater support and intervention in the area of behavioral health for persons with developmental disabilities.

“We don’t have a good handle on the needs of families in crisis,” Zanchi said.

The assessment tool that BHDDH uses to determine funding levels, the Supports Intensity Scale (SIS), garnered a new round of criticism, despite efforts in 2016 to reframe the questions it asks to better identify support needs and the re-training of all the social workers who conduct the highly scripted interviews..

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

Critic Says Assessment Method Is “Demeaning”

Peter Quattromani, executive director of United Cerebral Palsy RI and spokesman for the Providers Council, said the state should return to using the Personal Capacity Inventory to identify funding needs because it reflects a more collaborative approach than the SIS.

Quattromani said he sat in on several SIS interviews and found the SIS to be a “very demeaning experience” with “very intrusive questions.” In some cases the interview varied, depending on who was asking the questions, he said.

Antosh said when parents experience the SIS for the first time, “they are absolutely horrified by it.”

He suggested that when the SIS was first piloted, it was not intrusive. It was “a conversation”, albeit a lengthy one, lasting for or five hours, Antosh said. Afterward the responses were correlated with funding needs.

Antosh said the SIS was designed to help professionals develop support plans, not as a funding tool, even though Rhode Island and other states use it that way.

Antosh said he would recommend that Rhode Island design its own assessment tool, not necessarily eliminating the SIS but using multiple factors to determine funding, including an exploration of behavioral health issues and other areas not covered in the SIS.

Heather Mincey, assistant director of the Division of Developmental Disabilities, said not all the comments abut the SIS process she has received from families have been negative, with some parents saying it “wasn’t all that bad.”

The May 22 meeting concluded individual members’ presentations on recommendations for change, which will be reviewed and consolidated along common themes and incorporated into a plan for moving forward, said the Commission chairman, Sen. Louis DiPalma, D-Middletown.

He said he anticipated a five-year process for implementation, with the aim of making Rhode Island achieve top national ranking among state systems of developmental disability services.

In the meantime, DiPalma said that he next commission meeting, on June 18, will feature remarks by the state Director of Labor and Training, Scott R. Jensen; and the CEO of the Rhode Island Public Transit Authority, Scott Avedesian Employment and transportation are two topics that have sparked a lot of complaints, DiPalma said. He said he expects the commission to continue meeting into July.

"Project Sustainability” Commission To Continue Hearing Members’ Recommendations May 22

By Gina Macris

Members of a special legislative commission studying Rhode Island’s funding of services for adults with developmental disabilities are expected to finish presenting their recommendations for change at the commission’s next meeting Wednesday, May 22, according to the chairman, Sen. Louis DiPalma.

The recommendations which have been aired coalesce around a vision of a future in which adults with developmental disabilities get the supports they need to live where they want, find a job, and do what they want in their spare time, just like anyone else, in keeping with the integration mandate of the Americans With Disabilities Act. That mandate is reflected both in the Medicaid Home and Community Based Rule (HCBS) and the 2014 federal consent decree between the state and the U.S. Department of Justice.

To realize an inclusive future, it is critical that the state adopt an alternative to the current fee-for-service funding model, which poses “challenges and barriers” for the for the privately-run system of developmental disability services, DiPalma said.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has begun a review of the rates and the rate model for paying private providers and invites public comment by email at this address: BHDDH.AskDD@bhddh.ri.gov (Please copy and paste the email address.)

DiPalma said commission members have submitted comments on the rate review to BHDDH. In addition, the recommendations aired so far have sounded some common themes, including a need for better transportation and a desire for a seamless bureaucracy that can meet the needs of individuals at all stages of life, DiPalma said.

The transition between special education services in high school and the adult service system has been compared to “falling off a cliff” by many parents, according to anecdotal reports to the commission.

DiPalma said he will ask RIPTA, the Rhode Island Public Transit Authority, and the Department of Labor and Training to become directly involved in efforts to redesign the developmental disabilities service system. The consent decree, which resulted in the elimination of sheltered workshops in Rhode Island, calls on the state to increase supports to adults with developmental disabilities seeking jobs in the community.

The May 22 commission meeting will begin at 2 p.m. in the Senate Lounge at the State House.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Among the needs discussed May 6 are funding for:

  • training and career paths for staffers

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

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

  • Better access to affordable housing

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

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

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

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

RI BHDDH Wants Consultants' Comprehensive ‘Best Strategies’ For Integrated DD System

By Gina Macris

The most recent meeting of Rhode Island’s “Project Sustainability” commission Aoril 25 left members surprised by news that an outside review of Rhode Island’s rates and reimbursement methods for private providers of developmental disability services will not conclude with consultants making dollars-and-cents recommendations for a new scale of payments.

In a follow-up question, Developmental Disability News asked officials of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to elaborate on the reasons for the approach it has taken in commissioning the outside review, which is intended to help the state meet the requirements of a 2014 federal civil rights decree..

In a statement, a spokesman said the department is looking for the “best strategies” for developing and paying for an “integrated and individualized system of services” - characteristics which would comply with the consent decree.

That decree draws on the authority of the U.S. Supreme Court’s Olmstead decision, which reinforced the integration mandate of the Americans With Disabilities Act.

The existing reimbursement system for private agencies led to over-reliance on facility-based care and sheltered workshop employment, in violation of the integration mandate, according to findings of the U.S. Department of Justice, which laid the groundwork for the consent decree. The fee-for-service reimbursement system, called Project Sustainability, resulted to significant pay cuts for direct care workers, high turnover and a high rate of job vacancy.

“Determining how to stabilize the workforce and what to pay direct care workers is a broad question that touches on many moving parts,” said Randal Edgar, the BHDDH spokesman.

The salary of workers, called “direct support professionals,” is an important part of the rate structure, but there are other costs which are “vital to a provider’s enhanced functioning,” Edgar said. He listed these costs:

  • employee benefits

  • training

  • supervision

  • management capacity

  • information technology

  • connection and liaison with community

“Asking the consultants to determine just one of the vital elements would not meet the overall financial needs of the Rhode Island Developmental Disabilities system. We are looking for the consultant to identify best strategies for providing an integrated and individualized system of services and help us develop best strategies to pay for that system. But we do not think it is the consultant’s job to say what direct care workers should be paid,” Edgar said.

Anyone who has questions about the rate review may submit them to BHDDH.AskDD@bhddh.ri.gov, Edgar said. (Please copy and paste the email address.)

Meanwhile, the special legislative commission studying Project Sustainability will meet Monday at 2 p.m. in the Senate Lounge of the State House, according to its chairman, Sen. Louis DiPalma, D-Middletown.

DiPalma said the session will focus on members’ recommendations for changes to better enable adults with developmental disabilities to live the lives they want with the supports they need.

NESCSO Review of RI DD Reimbursement Won’t Generate Specific New Rate Recommendations

By Gina Macris

Elena Nicolella and Rick Jacobson All Photos By Anne Peters

Elena Nicolella and Rick Jacobson All Photos By Anne Peters

The non-profit consortium hired to review the reimbursements Rhode Island pays private agencies serving adults with developmental disabilities will not produce a new set of recommended rates, its executive director said April 25.

Rather, consultants supervised by the consortium will review the impact of the existing system and present facts and data that will enable the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to make more informed policy decisions, based on available funding and other factors, said Elena Nicolella. She is executive director of NESCSO, the New England States Consortium Systems Organization.

Nicolella addressed a special legislative commission studying the current fee-for-service rate structure, called Project Sustainability.

DiPalma and Kelly Donovan, A Consumer Advocate

DiPalma and Kelly Donovan, A Consumer Advocate

For more than an hour, the commission chairman, Sen. Louis DiPalma, D-Middletown, and other members of the panel peppered Nicolella and consultant Rick Jacobson with questions as they struggled to come up with a clearer idea of what NESCSO’s recommendations might look like.

The pair, aided by BHDDH officials, did flesh out the picture somewhat. But DiPalma, said Nicolella will be invited back in June to give an update on the work, which is underway.

“We will not be issuing recommendations on specific rates,” Nicolella said, explaining that is not within the scope of the work outlined in the contract between NESCSO and BHDDH.

The work will assess current rates quantitatively and qualitatively and analyze “the impact of the rate structure and payment methodology on people receiving services and the provider agencies and make recommendations for the future,” Nicolella said.

NESCSO will develop scenarios or “roadmaps” of what it would take for the state to achieve certain goals, putting the priority on the state’s obligation to meet the requirements of a 2014 civil rights consent decree with the federal government. That means the work will focus on day services and employment supports, at least initially, Nicolella said.

Some of the recommendations, however, will have implications for the entire system of services, she said.

Boss at 4-25 meeting edited.jpg

Rebecca Boss, the BHDDH director, gave an example of one system-wide priority – creating a stable workforce.

She was asked after the meeting why BHDDH structured the work the way it did.

Boss reiterated that NESCSO would present “facts and data” in an analysis based on certain assumptions. She and Nicolella said the policy decisions would be up to BHDDH.

“If the decisions we make (at BHDDH) don’t meet expectations, it will be out there,” Boss said, emphasizing that the work will be transparent.

The assumption at the heart of Project Sustainability was that providers could do the same work with less money. A former BHDDH administration relayed that assumption to the General Assembly in an unsigned memo that contained a slew of reimbursement rate reductions that formed the basis for cuts enacted in 2011 to inaugurate Project Sustainability. The reductions averaged 17 percent.

Boss said “that’s not the kind of assumption we’re talking about.” Instead, the assumption for one analysis might be that industry-wide, providers should have health insurance for their employees, Boss said. Another assumption might be the amount it costs providers to cover employee-related overhead, she said.

In a separate conversation outside the meeting, Nicolella said the recommendations would be “driven by the data” and “not limited by the by the state budget.”

At the same time, NESCSO will “stop short of what was recommended last time,” she said, alluding to the specificity of rates proposed by Burns & Associates, healthcare consultants who worked on Project Sustainability.

In 2011, Burns & Associates recommended rates that would have paid entry-level workers nearly $14 an hour, but after the General Assembly cut $26 million from developmental disability funding, many workers ended up at minimum wage.

Since then, wages have increased only incrementally, resulting in high turnover and job vacancy. Providers say the reimbursement rates do not cover their actual employee-related costs, like payroll taxes, health insurance, and the like.

During the meeting, Nicolella assured a spokeswoman for providers that the rate review will look at the agencies’ figures. At least one agency, Spurwink RI, has laid out its gap in dollars and cents several times before the House Finance Committee.

At the commission meeting, Spurwink’s executive director, Regina Hayes, asked Nicolella and Jacobson whether the review would pay attention to compatibility with current law.

For example, she said, the Affordable Care Act requires employers to pay health insurance for workers who put in at least 30 hours a week. But Project Sustainability assumes that only those working 40 hours a week are entitled to health insurance, Hayes said.

Nicolella responded, “That’s exactly the kind of information we should be hearing right now, because it’s extremely helpful.”

She and Jacobson both said the assessment of the impact of the current system will include engagement with consumers and families,as well as providers. But neither of them could lay out a schedule or format for that type of engagement.

NESCSO is required to produce a series of reports for BHDDH between June and December, she said. It is the consortium’s intent to complete the work in time for BHDDH to make its budget request for the fiscal year beginning July 1, 2020, Nicolella said.

Nicolella explained that NESCSO’s only mission is to serve the New England states as they seek to research issues and solve problems in the fields of health and human services.

“We are not a consulting company. We don’t sell our services,” she said.

In this case, NESCSO is overseeing four outside consultants, including Jacobson, who are doing the actual work.

NESCSO’s board of directors includes health and human services officials from five of the six New England states, according to its website. Only Maine is not listed as a member.

Nicolella said Rhode Island’s designated board member is Patrick Tigue, the Medicaid director. (Nicolella herself is a former Rhode Island Medicaid director.)

The consortium’s two sources of revenue are state dues and proceeds from a national conference. The BHDDH review is a member benefit, Nicolella said. The contract encompasses not only the work on developmental disabilities but a review of rates for behavioral healthcare services and a model for outpatient services for patients of Eleanor Slater Hospital. But the state still must pay for the consultants’ work - $1.3 million over an 18-month period.

Ongoing RI DD Rate Review To Be Aired Thursday At Project Sustainability Commission Meeting

By Gina Macris

Elena Nicolella, executive director of a non-profit consortium overseeing a review of the rates Rhode Island pays private providers for services to adults wlth developmental disabilities, will address the Project Sustainability Commission Thursday, April 25.

Sen. Louis DiPalma, D-Middletown, the commission chairman, said Nicolella will explain the scope of the work, the timetable, and the documentation that is required under the terms of the consortium’s contract with the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Nicolella is executive director of the New England States Consortium Systems Organization (NESCSO), a non-profit collaboration involving five of the six New England states that aims to promote policies and programs that will serve the needs of the region in a cost-effective manner, according to its website. Only Maine does not belong to the regional group.

DiPalma said he expects that “everything will be on the table” about Project Sustainability, the fee-for-service payment system which providers say hamstrings their ability to offer integrated services in the community as required by a 2014 federal consent decree.

Project Sustainability, enacted by the General Assembly in 2011, forced providers to cut workers’ pay to minimum wage levels, wiping out established career ladders that helped bring continuity to the care of adults with developmental disabilities.

In November, Mark Podrazik, the consultant who advised the state in planning Project Sustainability, told DiPalma’s commission that reimbursement rates should be reviewed every five years.

Thursday’s Project Sustainability Commission meeting featuring Nicolella will begin at 2 p.m. in the Senate Lounge at the State House, according to DiPalma.

NESCSO has a $1.3 million contract with BHDDH over an 18-month period to review private provider rates for developmental disabilities and behavioral healthcare service. The contract also calls on NESCSO to provide technical assistance in connection with creating out-patient services for patients of Eleanor Slater Hospital.

The work in developmental disabilities represents about $700,000 of that total, according to a BHDDH spokeswoman.

RI Consent Decree Coordinator, Tina Spears, To Lead CPNRI, Private Provider Trade Association

Tina Spears * Photo Courtesy CPNRI

Tina Spears * Photo Courtesy CPNRI

By Gina Macris

Tina Spears, who for 16 months has served as Rhode Island’s coordinator for state compliance with a 2014 federal civil rights consent decree affecting adults with developmental disabilities, has resigned to accept a position as executive director of the Community Provider Network of Rhode Island (CPNRI).

Spears’ last day at the Executive Office of Health and Human Services will be Friday, April 12, according to EOHHS spokesman David Levesque.

Spears has broad experience with issues involving developmental disabilities as a parent, advocate and policy maker, emphasizing the importance of the “consumer voice” throughout all her work, according to a statement from a CPNRI spokesman.

Before joining EOHHS as the state’s consent decree coordinator – a position required by the 2014 agreement between the state and the U.S. Department of Justice - she worked as a fiscal analyst for the state Senate, specializing in human service issues.

Spears also has provided direct support for families as a former government relations director of the Rhode Island Parent Information Network.

CPNRI Board members “were pleased to choose Tina from a pool of highly qualified applicants due to her significant experience advocating for people with disabilities and having worked effectively inside and outside state government,” the Board president, Gloria Quinn, said in a statement.

“We are excited to work with Tina as she leads CPNRI through a pivotal moment” in the transformation of the state’s privately-run service system for adults facing intellectual and developmental challenges, said Quinn. She is executive director of West Bay Residential Services, one of 22 private service agencies that make up CPNRI.

Quinn said members of CPNRI “are confident she will take our association to its next level of impact,” resulting in an improved quality of life for adults with developmental disabilities in Rhode Island.

Spears succeeds Donna Martin, who had served as CPNRI’s executive director from 2005 until March 1.

“The state thanks Tina for her commendable service” as consent decree coordinator, “and we look forward to working with Tina in her new position,” Levesque, the EOHHS spokesman, said in a statement.

Brian Gosselin, the chief strategy officer at EOHHS, will serve as the interim consent decree coordinator while the state searches for a permanent successor to Spears, Levesque said. It will be Gosselin’s second stint as interim coordinator.

“The state values the critical role the consent decree coordinator plays in the success of compliance activities of state agencies” in connection to the consent decree, Levesque said.

Counting Gosselin, there have been five consent decree coordinators since the agreement was signed April 8, 2014 and went into effect the following day.

R.I. Tightens Controls In Wake Of Embezzlement Of More Than $220K In DD Client Funds

By Gina Macris

See correction at end of article

A now-deceased Rhode Island state employee embezzled a total of $220,602 from a checking account held in escrow for residents of the state-run group home system, the state’s Office of Internal Audit has reported. 

The employee, Kevin B. Ward, died Nov. 26 at age 60, a few weeks after the State Controller flagged a suspicious transaction from the client checking account Ward controlled on behalf of residents of RICLAS, or Rhode Island Community Living and Supports, a part of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).. 

Rhode Island State Police investigated a suspicious death of a BHDDH employee last November that was ruled a suicide, according to a statement a state police spokeswoman made to the Providence Journal Dec. 13. 

On April 8, the spokeswoman, Laura Meade Kirk, said State Police could make no additional comment apart from the fact that its investigation closed without criminal charges. 

State officials have described the situation involving Ward’s death as tragic

“While no RICLAS program recipients were directly affected, this is a tragic situation for many of our state employees who knew and worked with the late Kevin Ward,” said BHDDH director Rebecca Boss after the state Office of Internal Audit completed its report April 3. Ward had been a financial manager for RICLAS from February, 2005 until his death. 

The state has made good on the funds belonging to the RICLAS residents and has recouped more than $70,000 from its insurance company, according to a spokeswoman for the Office of Management and Budget (OMB). The state also is exploring legal avenues to recover the rest of the money. 

The suspicious activity was discovered Nov. 2 by the state’s Controller, who, along with the Treasurer’s Office, was in the midst of a broader effort to tighten internal controls over the custody of state-owned checking accounts, the director of the Office of Internal Audit, Dorothy Pascale, wrote in an April 3 memo to Boss.

The OMB spokeswoman, Brenna McCabe, elaborated: 

Since November, the state’s Office of “Accounts and Control has worked with our finance units across all agencies to implement and reinforce measures to help prevent this from happening again.” 

Among other oversight and control measures, she said, new rules require two persons to sign checks and prevent those who signed the checks from cashing them. 

Ward had been authorized both to sign and cash checks on behalf of the State of Rhode Island.

According to Pascale’s memo, Ward transferred money from the RICLAS’ residents’ account to another, long-dormant, state-owned RICLAS checking account at Bank of America, and from there, to his own Citizens Bank checking account. 

Ward had complete control over the Bank of America account that paid directly into his own Citizens Bank account. He even received the account statements from Bank of America.  

Pascale said investigators found records of 21 checks totaling $220,602 payable to Kevin B. Ward that were deposited in Ward’s Citizens Bank checking account from August, 2011 to November, 2018. The check that triggered the investigation had been made out to Ward for $4,500 on June 20, 2017 but was not spotted for more than 16 months. 

On August 1, 2011, the state-owned Bank of America account had a balance of $38,476, but the bank does not retain records longer than seven years, so investigators were not able to gather evidence of account activity prior to that date, Pascale said.

Ward skimmed funds from a client account containing social security-related income used to help pay for the state’s cost of operating RICLAS facilities, in effect serving as contributions toward room, board, utilities and the like.

An earlier version of this article incorrectly described the purpose of the client account.

RI DD Funding System Harms Quality Of Life, Advocates Tell House Finance Subcommittee

By Gina Macris

Anxiety, frustration, and fear permeate the lives of adults facing the daily challenges of developmental disabilities, and by extension, the lives of families and caregivers who support them, say numerous Rhode Islanders who wrote to members of the House Finance Committee recently to explain the human effects of chronically underfunded services.

“The person receiving support grieves and is forced to live in a state of perpetual frustration” because of missed opportunities resulting from staff shortages, wrote Diane Scott, who has worked 29 years at West Bay Residential Services. Likewise, “the impact on employee morale is a palpable anxiety and frustration,” Scott said.

Howard Cohen * Photo by Anne Peters

Howard Cohen * Photo by Anne Peters

Jacob Cohen has had to begin taking a “significant regimen of medication to control his anxiety so he could deal with his daily life,” wrote his parents, Howard and Patricia Cohen of North Kingstown. They said it has been “heartbreaking” to watch him lose control of his daily activities as funding has shrunk over the last decade.

The letters from Scott, the Cohens, and others served as written testimony in a March 28 budget hearing on the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) before the House Finance Subcommittee on Human Services, chaired by Rep. Alex Marszalkowski, D-Cumberland.

And some of concerns expressed before the finance subcommittee about the quality of care overlapped with remarks made a few hours earlier the same day before a special legislative commission studying the state’s fee-for-service reimbursement system for private developmental disability services, Project Sustainability.

Another letter writer, Holly Walker said she knows a client of AccessPointRI who spends every Monday morning telling everyone how upset she is that she missed Sunday church services – again – because there was no one available to take her.G

A Warwick mother, Pam Goes, wrote that frequent change of staff has increased her own fears about the safety of her non-verbal son.

“Staff who don’t know him struggle to know what he needs, at home and in the community. He is unable to tell them when he is sick, when something hurts, when he is afraid. And my fears are increased as well,” Goes wrote.

Two other mothers, Lisa Rego and Claudia Swiader, asked members of the Finance Committee “to put themselves in the shoes of the parents and families of individuals with a developmental disability.”

“Wouldn’t you want to know that your loved one was being cared for by someone who wanted to be there? Wouldn’t you want to know that your loved one was receiving the support they needed to keep them safe, healthy and happy?” wrote Rego and Swiader, president and vice president, respectively, of the Autism Society of Rhode Island.

Scott, the veteran caregiver at West Bay Residential Services, reminded legislators that “any Rhode Island citizen may be one injury or disease away from needing support for a disability.”

The children and families of workers also suffer the consequences of inadequate funding, others said.

Brandi Ekwegh of Cumberland, a former manager of an AccessPoint group home and a single parent, described missing her tween-aged daughter’s concerts and award ceremonies and even leaving her home alone at 2 a.m. because there was no one else to de-escalate a client’s behavioral outburst at work.

When her daughter said she spent more time with her clients than with her, Ekwegh said, “I was crushed but she was absolutely correct.”

Disabled Have Civil Right To Services

By any measure, caring for adults with developmental disabilities is costly, but the integration mandate of the Americans With Disabilities Act also entitles them to services that allow them to access their communities for competitive employment and leisure activities of their own choosing.

The currently enacted budget for the state Division of Developmental Disabilities (DDD) totals $271.7 million in federal and state Medicaid money and miscellaneous other funds. Governor Gina Raimondo would add another $9.2 million to that bottom line, for an overall $280.9 million, to erase an existing deficit and pay for services during the fiscal year beginning July 1.

About $1.6 million in savings taken from the state-operated group home system, Rhode Island Community Living and Supports, would boost funding for privately-run services by $11 million over the next 15 months, according to information presented by the House Fiscal Office.

Within the $11 million total increase, Raimondo would set aside $6.4 million in Medicaid funds, including $3 million in state revenue, to raise the wages of front-line developmental disability staff by an estimated 34 to 41 cents an hour, depending on who’s drafting the projection.

Providers, Families, Seek $28.5 Million For Wages

Many of the letter-writers urged the Finance Committee to hike the state’s commitment for wages to $28.5 million, so that employers can meet unfunded overhead expenses in addition to passing along a wage increase to all their employees. Every Medicaid dollar the state spends generates a little more than a dollar in the federal Medicaid match.

As it now stands, the governor’s proposed increase would apply only to front-line workers, who typically make roughly $1 to $2 above minimum wage, if that.

In a letter to Marszalkowski , the subcommittee chairman, Kevin McHale, an administrator at AccessPoint, wrote that the average direct care worker at his agency makes $10.77 an hour, only slightly above minimum wage.

McHale, once a direct care worker himself, recalled that in 1987, the General Assembly voted to make a “substantial investment” in the private provider system by raising the pay of direct care workers to $7 an hour, about 90 percent above minimum wage, which was then $3.65 an hour.

At a time when the state was preparing to close the Ladd School, its only institution for persons with developmental disabilities, “this investment was seen as an intentional statement on the importance and value of the vital and challenging (yet rewarding) work that direct support professionals perform,” McHale wrote.

Today, private service providers operate at a loss for each person they employ, they say.

Regina C. Hayes, executive director of Spurwink RI, provided the committee with tables showing that the state funds a fulltime direct care position at $34,454, including an allowance of 35 percent of wages for employee-related expenses. But that figure is almost $9,900 per-person less than what it costs Spurwink for mandatory taxes, vacation, sick and holiday pay and health insurance, Hayes said.

The percentage the state pays for employee-related overhead is set through “Project Sustainability,” the controversial fee-for-service system enacted by the General Assembly in 2011.

Howard and Patricia Cohen, Jacob’s parents, say that Project Sustainability has harmed their son. The change in reimbursement methods “masqueraded as an improvement but in effect was merely a way to reduce costs,” they wrote.

Those already receiving services are not the only ones affected by the budget constraints.

Agencies Can’t Afford New Clients

Linda Ward, executive director of Opportunities Unlimited, a service provider, said that current funding and staffing situation makes it difficult for her agency to take on new clients or launch new initiatives.

Opportunities Unlimited recently had to “step back” from plans to develop a home designed to meet the significant psychiatric and behavioral needs of four women, Ward said.

Her testimony echoed comments made earlier in the day by Gloria Quinn, executive director of West Bay Residential Services, who addressed the special legislative commission studying Project Sustainability.

Families of young people aging out of the special education system often struggle to find agencies that are able to provide services for their sons or daughters, she said.

“We can’t find the staff”, said Quinn, a commission member. An agency’s ability to respond to the demands of the community is at its heart “a wage issue,” she said.

Andrew McQuaide, a senior director at the Perspectives Corporation, called the situation “self-directed by default,” meaning that parents who may not otherwise chose to do so are left to manage their loved ones’ individual programs because they can’t find an agency to provide appropriate services.

McQuaide, another member of the Project Sustainability commission, said that so-called self-directed families are having the same problems as the agencies in hiring direct care workers, but the families are doing it “without support.”

At the commission meeting, Barbara Burns said she recently decided to do a self-directed program of day services for her sister, not because she wants to do it but because it was the only way she could get respite care. Burns’ sister has Down syndrome and Alzheimer’s disease and lives with her on Aquidneck Island.

A proposal in the governor’s budget would create an “independent provider” model of care through the Executive Office of Human Services with a single fiscal intermediary to give those needing services at home broader choice in selecting caregivers.

The independent provider model also would give BHDDH the option selecting one fiscal agent to manage the accounts of self-directed families of adults with developmental disabilities, Linda Haley, a House fiscal advisor, told the finance subcommittee.

The prospect of unwanted change has worried some families, but a BHDDH spokesman said April 1 that DDD will continue with five fiscal intermediaries in accordance with its regulations, as well as a desire to give consumers choice.

Burns, meanwhile, said there should be a single state bureaucracy to address the needs of people with developmental disabilities, whether they are children in school, healthy adults, or people facing chronic illness or the end of life. Families face enough challenges caring for a special child, she said.

Semonelli * image courtesy of capitol tv

Semonelli * image courtesy of capitol tv

Christopher Semonelli, vice president of Rhode Island Families Organized for Change and Empowerment (RIFORCE) , made the same point to the finance committee’s human services subcommittee a few hours later.

Parents of special education students describe the transition to adult services as “falling off a cliff,” said A. Anthony Antosh, Director of the Sherlock Center on Disabilities at Rhode Island College.

Rebecca Boss, the BHDDH director, told commission members that there are other ways to increase wages for direct care workers besides adding to the bottom line.

Even if the state increased wages, Boss said, the milennials millennials making up the current entry-level workforce are “a little different.” Direct care workers need adequate training and supports. “It’s about making sure people love their jobs,” Boss said.

L to R: Louis DiPalma, Rebecca Boss, Heather Mincey OF DDD. * Photo By Anne Peters

L to R: Louis DiPalma, Rebecca Boss, Heather Mincey OF DDD. * Photo By Anne Peters

Wages are “part of it,” she said, but “I’m hesitant to say it’s the solution. It’s part of the solution.”

She recalled testimony presented to the commission in January about Vermont’s system, which included higher rates for direct care workers but much less reliance than Rhode Island on costly group homes.

Later, Boss told the House Finance subcommittee that she wants to reduce the number of adults with developmental disabilities living in group homes from the current 32 percent to the national average, 26 percent.

BHDDH also has launched a review of the reimbursement rates the state pays to private providers under the terms of Project Sustainability, with an eye toward creating an alternate payment model to the current fee-for service system.

Tom Kane, CEO of AccessPoint, reminded the finance committee members that the same healthcare consultant who helped develop Project Sustainability has just recommended that California increase developmental disability budget by 40 percent, or $1.8 billion. Rhode Island should be prepared for a a report that recommends a similar percentage increase, ane said, given that the state underfunded Project Sustainability from its inception.

Louis DiPalma, D-Middletown, the chairman of the Project Sustainability commission, made the same point earlier in the day.

The consultant hired for the rate review and study of alternate payment model, Elena Nicolella, executive director of the New England States Consortium Systems Organization, will speak at the next meeting of the Project Sustainability commission, according to DiPalma, the commission chairman. Nicolella is also a former Medicaid director in Rhode Island. The date of that meeting has not yet been set.