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.

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.)

Two RI DD Events Scheduled For Tuesday, July 30

The special legislative commission studying Rhode Island’s reimbursement system for private providers of developmental disability services and the state’s Division of Developmental Disabilities will each hold separate events the afternoon of Tuesday, July 30.

The commission meeting will feature an update on the ongoing rate review from Elena Nicolella, the executive director of the New England States Consortium Systems Organization, which is supervising the work, according to state Sen. Louis DiPalma, D-Middletown, chairman of the panel..

He said the commission’s regular meeting place, the Senate Lounge in the State House, will not be available that day. The panel will meet at 1 p.m. in the Arnold Conference Center in the Regan Building of Eleanor Slater Hospital, off Howard Avenue in Cranston.

From 4 to 6 p.m., the state Division of Developmental Disabilities will host a community forum at the Cumberland Public Library, 1464 Diamond Hill Rd., Cumberland. Anyone interested in attending may email agenda topics to BHDDH.ASKDD@bhddh.ri.gov (Click the email address or copy and paste it into your email program.)

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.

Moseley To Step Down As Court Monitor of RI Olmstead Consent Decree, Citing Health Concerns

Charles Moseley

Charles Moseley

By Gina Macris

Charles Moseley, the independent federal court monitor overseeing implementation of two federal civil rights decrees affecting Rhode Islanders with developmental disabilities, will step down at the end of September because of what he termed “emerging health issues.”

Brian Gosselin

Brian Gosselin

In a related matter, Brian Gosselin, chief strategy officer at the Executive Office of Health and Human Services (EOHHS), has been named the state’s consent decree coordinator, a post he has filled on an interim basis twice in the last few years. Rhode Island has had five consent decree coordinators, including Gosselin, in five years.

The personnel changes were announced July 18 by EOHHS. Before Moseley resigns on Sept. 30, he said in his letter, he intends to complete his assessment of whether the city of Providence is in substantial compliance with the first of the two federal agreements, reached in 2013.

In it, the city stopped using the Birch Academy at Mount Pleasant High School as a feeder program for a now-closed sheltered workshop called Training Through Placement and instead pledged to help high school students with intellectual or developmental challenges make the transition to competitive employment in the community.

The 2013 “Interim Settlement Agreement” (ISA) is set to expire in 2020, but lawyers for the U.S. Department of Justice (DOJ) have said the city must be in “substantial compliance” a year ahead of time. Moseley’s resignation letter indicated he is working on that assessment. The city, meanwhile, has asked for early release from the ISA.

Moseley has served as the federal court monitor since late 2014, a few months after the state and the DOJ settled a broader civil rights complaint saying that Rhode Island’s system for developmentally disabled adults relied too heavily on sheltered workshops and segregated day centers. Former Gov. Lincoln Chafee signed a consent decree with the federal government in which he pledged that the state’s system would be overhauled by 2024, making certain that those who wished to participate in work, learning and recreation in the larger community would be helped to do so.

The 2014 settlement marked the first Olmstead consent decree in the country targeting segregated day services for adults with developmental disabilities. The Olmstead decision of the U.S Supreme Court reinforced the Integration Mandate of the Americans With disabilities Act. Previously, the DOJ had enforced the ruling in connection with segregated housing.

Moseley is a former director of developmental disabilities in Vermont and a former associate executive director of the National Association of State Directors of Developmental Disabilities Services.

A new court monitor would need the approval of the state, the DOJ and Judge John J. McConnell, Jr. of U.S. District Court, who is overseeing the case. McConnell has made it clear that he relies on Moseley’s recommendations in steering the implementation of the consent decree.

In his letter, Moseley said the decision to step away after five years “is a very difficult one to make.”

He said he has enjoyed working with all involved and will miss the “in-depth discussions and negotiations that we have had in our ongoing efforts to achieve the goals and outcomes identified by the two agreements.”

Moseley, who lives in Vermont, has made site visits to Rhode Island several times a year, usually keeping out of the public eye, and has incorporated his observations, as well as data supplied by the state and the city, into quarterly reports to McConnell. He also has attended periodic status conferences on the case before McConnell.

“Implementing comprehensive systems change within the boundaries of the complicated developmental disabilities system is challenging,“ Moseley said. He praised a variety of state and city officials for “actively addressing the changes that must be made.” He also recognized the DOJ lawyers for their “constructive approach and unwavering focus” on individuals with intellectual and developmental disabilities.

RI DD Rate Reviewers Asked To Fix Payment System That Still Promotes Segregated Care

By Gina Macris

This article was updated June 17 with a response from the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

The Rhode Island state agency which funds services for adults with developmental disabilities has acknowledged for the first time that its underlying reimbursement system for private providers is structurally deficient for complying with the Americans With Disabilities Act as required by a 2014 federal civil rights decree.

While the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has pursued services promoting greater independence for adults with developmental disabilities, “the underlying reimbursement system has lagged,” according to a statement of the scope of work outlined for a consortium tasked with reviewing reimbursement rates.

The rate structure “is grounded in past practices and cost bases associated with the provision of services in the sheltered workshop setting,” BHDDH officials wrote.

“In order to adequately meet consumers’ needs, providers have been paid supplemental funds to address the deficiency in the payment rates,” BHDDH explained in the contract.

BHDDH has a contract with the New England States Consortium Systems Organization (NESCSO) to update a rate structure that has not been reviewed for eight years and to suggest alternates to the current payment methods.

In describing the work ahead for NESCSO, BHDDH says it is:

“seeking to further promote the development of a service system and associated reimbursement arrangements that maximize the opportunity for persons with DD to participate to the fullest possible in community-based activities.”

In 2014 the U.S. Department of Justice found that the reimbursement system incentivized segregated care in sheltered workshops and day centers in violation of the Integration Mandate of the ADA, reinforced by the U.S. Supreme Court in the Olmstead decision.

The Obama administration began vigorously enforcing the Olmstead decision in 2009, but the consent decree in Rhode Island was the first settlement that addressed segregation in daytime services rather than housing.

The consent decree provides a decade-long period of federal oversight of the state’s efforts to change the system. Enforcement of the consent decree entered its sixth year April 9. It will take at least another year for changes in rates and payment methods to go into effect, with the approval of the General Assembly. Enforcement of the decree is set to expire in 2024, but the state would have to show substantial compliance before federal oversight ends.

While some improvements in services have been made, the contract with NESCSO indicates that BHDDH officials believe the reimbursement system has held back compliance efforts.

Staffing Ratios Hinder Needed Flexibility

The underlying problem, said the BHDDH director in an interview, is a rule that requires a ratio of 60 percent funding for community-based activities and 40 percent funding for center-based daytime care in each client’s individual authorization.

The contract language alludes to this situation in describing staffing ratios. It says two areas of “particular focus” are daytime rates paid for employment-related and non-work services. In sheltered settings, for example, there might be one worker for every ten clients. But in the community the number of clients for each worker would have to be much smaller.

Rebecca Boss, the BHDDH director, said the department seeks a “predictable rate structure not driven by very precise ratios” but rather by the needs and preferences of individual clients.

The supplemental payments intended to mitigate the deficiencies in the underlying system “are an increasing portion of overall payments, reflecting the inadequacy of the current rates,” the contract language explained.

According to department officials, that language was meant to refer to the historical trend, in which supplemental payments had increased to as much as $7.8 million in a three-month period.

Boss froze new approvals at the end of 2017, except for emergency health and safety considerations and a couple other narrowly defined exceptions, to try to curb a multi-million dollar deficit at a time when Governor Gina Raimondo seemed inclined to cut developmental disability services significantly.

According to records BHDDH turns in to the General Assembly every month, the supplemental payments from January through March of this year have declined to $3.6 million, about half the total for the same period in 2018.

Historically, supplemental payments have been awarded only when consumers, families, or providers have made successful appeals of individual authorizations. The appeals, which often have required considerable time and energy, must be made annually, or the authorization reverts to the original amount. The appeals process is but one facet of what many families and providers describe as an unstable system.

Kerri Zanchi, director of the Division of Developmental Disabilities, said supplemental payments are still a big part of reimbursements to private providers, and BHDDH wants NESCSO and its consultants to scrutinize them as part of the review process.

Study Commission To Hear from NESCSO

The rate review coincides with the work of a special legislative commission studying the current reimbursement system, called Project Sustainability.

On June 18, the commission will meet to hear presentations about employment and transportation issues from Scott Jensen, director of the Department of Labor and Training; and from Scott Avedesian, CEO of the Rhode Island Public Transit Authority.

On June 25, the executive director of NESCSO, Elena Nicolella, is scheduled to appear before the commission to give an update on the rate review now being conducted by four consultants under NESCSO’s supervision.

In the meantime, some commission members have given BHDDH their own statements on how they think consultants should approach the work and their ideas for a new system of services that allow consumers and their families to shape the way state funds are used.

A spokeswoman for providers has urged NESCSO and its consultants to gain a thorough understanding of what it costs for a private agency to provide services under the terms of recently-revised regulations for provider operations and quality certification standards.

These bureaucratic steps are part of the state’s efforts to comply with the consent decree and the federal Medicaid Home And Community Based Final Rule (HCBS). Like the consent decree, HCBS embraces the integration mandate of the ADA, but it is a nationwide rule applying to all community-based services funded by Medicaid.

Paradox In Unspent Funds For Employment

Tina Spears, executive director of the Community Provider Network of Rhode Island, warned that simply looking at the way providers utilize the current reimbursement model, which is based on segregated care, will not give the complete picture of the needs of the system.

She did not mention specifics, but a case in point is the performance-based supported employment program, which was funded by a $6.8 million allocation made by the General Assembly in the fiscal year that began July 1, 2016. That allocation still has not been completely spent.

Excluding a start-up period from January through June of 2017, the program spent $2.5 million the first year, from July 1, 2017 through June 30, 2018. It’s expected to spend $4 million in the fiscal year ending June 30, according to a BHDDH spokesman.

Providers initially complained that they could not meet their costs with the series of one-time incentives offered by the program, which was built on same reimbursement system designed for center-based care.

Incentives and enhancements were made more generous during the second year, and negotiations are underway for a third year of the program.

In the meantime, Rhode Island’s last sheltered workshop closed last year and BHDDH says community-based, competitive employment has increased to about 29 percent of adults with developmental disabilities.

A study released by two nationwide associations of providers in January said Rhode Island’s rate of competitive employment was about 19 percent, but that figure dated from 2015. The “Case for Inclusion” ranked Rhode Island 32nd in the nation on its integration efforts. It was compiled by ANCOR - the American Network of Community Options and Resources, and UCP – United Cerebral Palsy.

Consumers Want More Control Over Money Assigned To Them

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, and Kelly Donovan, who receives state-funded supports, each called for a system that allows greater consumer control of state funding and greater flexibility in the way it is used.

The state should “ensure that funding is available across all imaginable living arrangements,” particularly in situations where a consumer owns or rents a property and a caregiver or family would like to move in. The caregiver or consumer should be allowed a stipend, as is permitted in many other states, to make this type of arrangement viable, Nerney said.

The state should also ensure that adults with developmental disabilities have the support of familiar staff while they are hospitalized to avoid the trauma of being in an unfamiliar environment where they can neither make themselves understood nor understand what is being said to them, Nerney said.

In addition, the state should adopt a way to assess the support a person receives from family or friends in deciding funding levels. While most of those receiving services from the Division of Developmental Disabilities live in the family home, that home may include a large healthy family, a single aging parent, or a grandparent with Alzheimer’s and a sibling who also has significant needs for support, Nerney said.

And he called for more funding for those hired by self-directed consumers and their families to write support plans necessary to qualify for state funding. The expectations for the plan writers have multiplied over the last 20 years but the fees remains the same at $500 for the initial plan and $350 for an annual renewal, Nerney said. There should be an allowance for self-directed families who need ongoing coordination of services, he said.

Kelly Donovan, who herself receives services from BHDDH gave a concrete example of what greater control and flexibility might look like.

She said people should be able to enjoy an outing without:

A: going home early because a staffer’s shift ends

B: taking everyone in your group home with you, even if one or more of them really didn’t want to come.

“People should be able to have their designated time to themselves and opportunities to be involved in community activities,” she said.

The public may submit comments or questions about the rate review process by email at BHDDH.AskDD@bhddh.ri.gov. Please copy and paste the email address into your email program, or get a link by visiting http://www.bhddh.ri.gov/developmentaldisabilities/community_forums_event.php

In response to this article, Randal Edgar, a spokesman for BHDDH, released the following statement on June 17:

The article published on June 12 on the Olmstead Updates blog presents a misleading picture of Rhode Island’s system of care for adults with developmental disabilities.

The headline claims this system “promotes segregated care.”

This assertion is false.

The article attempts to back up this assertion up by referring to language in a state contract with a consultant that is reviewing the rates paid to DD providers. But in referencing the contract language, the article misreads the intent of that language.

The contract language speaks from a historical perspective. It states that while the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals has pursued the development of “a services system that supports greater independence” for the DD population, “the underlying reimbursement system has lagged.” It goes on to say that the “basis for the development of prevailing rates is grounded in past practices and cost bases associated with the provision of services in the sheltered workshop setting.”

Acknowledging that the existing rates are grounded in past practices and need to be updated is not the same as saying the system as it operates today promotes segregated care, and in saying it does, the article ignores and/or minimizes many steps the department has taken to improve the care provided to adults with developmental disabilities. It should be noted that the reporter met with BHDDH officials for more than an hour but did not press this assertion and obtain their view of the contract language.

The article is wrong again when it states that department froze new approvals for supplemental payments in 2017 to help offset a budget deficit. The department reduced those approvals, applying more stringent standards, not because of a possible budget deficit but because this made sense from a policy standpoint.

Finally, the article gives voice to people outside the department, asking them to describe where the DD care system should go, without giving BHDDH officials a chance to share their vision. In the process, it conveys a false impression that BHDDH officials are not passionate about moving this system forward.

We are disappointed that the article did not present a more complete and accurate picture.

Separately, the public may submit comments or questions about the rate review process by email at BHDDH.AskDD@bhddh.ri.gov. Please copy and paste the email address into your email program, or get a link by visiting http://www.bhddh.ri.gov/developmentaldisabilities/community_forums_event.php

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.

Advocates: RI Must Put Higher Value On DD Workforce To Ensure Stability In Client Services

Image courtesy of RI Capitol TV

Image courtesy of RI Capitol TV

By Gina Macris

The incremental pay increase that Rhode Island Governor Gina Raimondo proposes for those who care for adults with developmental disabilities- about 34 to 41 cents an hour - is “much appreciated,” Tom Kane, CEO of AccessPoint RI, told the House Finance Committee recently.

But “it’s not enough,” Kane added quickly.

Entry-level workers making an average of $11.44 an hour, or more experienced colleagues paid an average of $12.50 an hour, are “often helping a person eat, shower, use the bathroom, or they could be helping someone learn how to drive their car,” Kane said.

“It is a completely and utterly important job, but based on the funding available, it is not really valued by our state,” Kane continued.

“ I’ve said this in this room a number of times. A budget is a statement of values, and what we’re saying is that this work isn’t worth enough money to make a living.”

To illustrate his point, Kane told Finance Committee members that he searched for jobs on the website Indeed.com to prepare for his testimony March 13 and found a posting from a kennel seeking someone to clean cages for $14 an hour.

“Not that I would disparage any job that anyone would have,” Kane said. “I think there should be dignity in all work. I think as a society we have to say, for those who care and support the people to live in the community, to try to have the best life possible, we need to fund the agencies to pay a reasonable rate.”

Kane spoke from the perspective of some three dozen private service providers in Rhode Island, the core of the state’s developmental disability service system. These agencies are trying to make ends meet while dealing with high job turnover and high vacancy rates, as well as the costly overtime it requires to ensure the safety of the vulnerable people in their care.

In the context of the state’s fee-for-service Medicaid reimbursement system, now in its eighth year, the concerns of the providers converge with those of a 2014 federal consent decree which spells out the civil rights of people who, through an accident of birth, spend a lifetime trying each day to rise to the challenge of diverse disabilities.

And in the past year, there has been growing pressure for change, both from those overseeing the implementation of the consent decree and from an expanding chorus of advocates.

In a “Week of Action” planned by the Community Provider Network of Rhode Island (CPNRI) March 26 through 28, providers and their supporters, including consumers and their families, will fan out under the State House rotunda to buttonhole individual legislators in the hours before the bell sounds shrilly at 4 p.m. calling the House and Senate to order.

In the fiscal year beginning July 1, Raimondo has proposed a $6.4 million budget increase targeted for pay raises, including $3 million in state revenue and $3.4 million in federal Medicaid funds. This sum would raise the wages of direct support workers by what state officials estimate as 43 cents an hour.

But the leaders of CPNRI and the Provider Council, another trade association, say that to stabilize the private system of developmental disability services, providers need about $28.5 million in state revenue, which would generate a roughly equal amount in federal Medicaid payments.

“We recognize that this is a substantial amount of money, but it is a result of chronic underfunding,” said Donna Martin and Peter Quattromani in a letter to Raimondo dated Jan. 9. Until March, Martin was executive director of CPNRI. Quattromani, executive director of United Cerebral Palsy of Rhode Island, represented the Provider Council.

Their reference to “chronic underfunding” alludes to “Project Sustainability,” the fee-for service funding model enacted by the General Assembly in 2011 with a $26-million budget cut. Project Sustainability was cited by the U.S. Department of Justice in 2014 as contributing to a segregated system of services that violated the integration mandate of the Americans With Disabilities Act.

With the closing of the Ladd School in 1994, Rhode Island was once first in the nation in de-institutionalizing adults with developmental disabilities and its efforts to include former residents in everyday life in the community. Today, 25 years after the Ladd School was shuttered, Rhode Island is ranked 32nd among the states in its inclusion efforts by CPNRI’s national affiliate, the American Network of Community Options and Resources.

Project Sustainability is currently the subject of two separate reviews, one by a special legislative commission and another by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which has hired a consultant to scrutinize both the reimbursement rates and the fee-for-service model itself.

Between 2011 and 2012, Project Sustainability exacerbated a downward trend in funding for developmental disabilities that eventually leveled off but has not caught up with the pace of inflation, despite budget increases in recent years, according to a ten-year analysis done by CPNRI. The study used state budget figures and consumer price index information kept by the state Department of Labor and Training.

Chart Courtesy of CPNRI

Chart Courtesy of CPNRI

Low wages have put Rhode Island service providers at a disadvantage in trying to recruit a variety of personal care workers like those who work with adults with developmental disabilities, experts say.

CPNRI reports that about one in three workers leave a developmental disability job every year, mostly, they say, because they can’t pay their bills. One in five positions remain vacant, driving up the cost of overtime necessary to ensure the safety of the vulnerable people in care, according to the trade association.

PHI National, long-term care consultants, have produced a chart comparing the earnings of personal care workers in Rhode Island, Connecticut and Massachusetts that shows Rhode Island with the lowest wages and the least buying power relative to the minimum wage.

chart courtesty of PHI and CPNRI

chart courtesty of PHI and CPNRI

Policy experts say that basic demographic data for the nation indicates a shortage of personal care workers in the next few decades. That was one of the key messages delivered by Mary Lee Faye, executive director of the National Association of State Directors of Developmental Disabilities Services, to the Project Sustainability study commission in January.

Meanwhile, the House Fiscal Office estimates that the governor’s proposed raise for front-line developmental disability workers would add add 41 cents to their average hourly wage, lifting it from $12.27 an hour to $12.68 an hour. The overall $6.4 million pay hike doesn’t include raises for supervisors or job development and support coordinators, the House Fiscal Advisor, Sharon Reynolds Ferland, has told the House Finance Committee.

Providers say the state’s estimates don’t match up with actual costs. The state funds 35 percent of overhead related to employment, including mandatory costs like health and dental insurance, workers compensation insurance, payroll taxes, paid time off and other items, according to a CPNRI policy paper.

In reality, providers say, these employee-related expenses cost 64 percent[1] of wages – a point CPNRI’s Martin and the Provider Council’s Quattromani made in their Jan. 9 letter to Raimondo.

Providers fill the gap between the available state and federal Medicaid funding and the actual costs of employee-related overhead by reducing the amount of the wage increase passed along to workers. Kane, in his testimony, said that for the lowest-paid direct care workers, Raimondo’s planned pay increase will not even cover the cost of a separate proposal she has made to increase the state’s minimum wage for all workers from $10.50 to $11.10.

In the last few years, individuals with developmental disabilities, their families, and providers have gained legislative advocates, most prominently Sen. Louis DiPalma, D-Middletown, who is the first vice-president of the Senate Finance Committee.

DiPalma, as chairman of the special legislative commission studying Project Sustainability, convinced a consultant involved in developing that fee-for-service model to return to Rhode Island and testify about his work last November.

Mark Podrazik, a principal in the Arizona-based Burns & Associates, made it clear that Project Sustainability was shaped in a frantic effort to control costs.

Mark Podrazik * Photo By Anne Peters

Mark Podrazik * Photo By Anne Peters

The firm ultimately was paid a total of $1.4 million to develop Project Sustainability and monitor how it affected spending for developmental disabilities services. (The funding model contains no provisions for measuring the impact of services on individuals.)

Podrazik testified that some of Burn’s key recommendations were ignored, including a proposed base pay of $13.97 an hour for direct care workers that would increase within a year or two to $15 an hour. That was in 2011.

Today, eight years later, advocates are still chasing that $15-hour wage. About a month ago, DiPalma and Rep. Evan Shanley, D-Warwick, introduced companion bills to raise direct care workers’ pay to $15 an hour by July 1, 2020. The chairman of the Senate Finance Committee, William D. Conley, was among the co-sponsors of DiPalma’s bill.

More recently, DiPalma introduced a second bill that would require all private human service agencies under contract with the state to pay their employees at least 44 percent above the minimum wage at any given time. Both Conley and Senate President Dominick Ruggerio have signed on to this bill as co-sponsors.

A year ago at this time, Raimondo had proposed an $18.4 million cut in developmental disability services for reasons that were never spelled out in public. Raimondo rejected warnings of(BHDDH) that the move would result in waiting lists for services or cuts in programming.

The proposed cut appeared to be unacceptable to an independent court monitor who continues to oversee implementation of the 2014 consent decree. The agreement calls for integrated, community-based services that are inherently more costly than the facility-based system embedded in Project Sustainability.

In May, 2018, the monitor, Charles Moseley, obtained written assurances from Raimondo that she would continue to support the work of the consent decree, which in the moment meant restoring the almost all the $18-million cut.

In the courtroom, the judge who periodically oversees the status of the consent decree, John j. McConnell, Jr. of U.S. District Court, has indicated his willingness to issue orders to ensure that specific goals of the consent decree are met. At the same time, he said he couldn’t order the state to spend a certain amount to achieve them.

Meanwhile, Moseley has continued to keep abreast of budget developments. In February he wrote McConnell, saying Raimondo’s proposed budget “appears adequate” to cover a deficit in the current fiscal year and fund the consent decree in the budget beginning July 1.

Without mentioning how the Governor may have calculated developmental disability budgets in the past, Moseley made a point of saying he has received assurances that the latest figures are based on real-time data about the projected use of developmental disability services.

The state’s lawyer, Marc DeSisto, has assured him that “the Governor’s recommended budget accepts the most up-to-date projections for financing the current costs of the system to ensure no changes for individuals with DD and continued commitment to achieving Consent Decree outcomes,” Moseley wrote the judge.

Moseley put the current working budget for the private system of developmental disability services at about $229.4 million. Raimondo’s proposal adds about $4 million to finish the current fiscal year, for a total of $233.4 million. Moseley said the increase includes:

· $1 million for the estimated growth in the number of people receiving services

· $1.3 million for increased costs of providing services

· $645,000 to compensate for unrealized savings in moving group home residents into less costly residential options

· $500,000 in other priorities.

In the fiscal year beginning July 1, Moseley said, Raimondo would add about $7.3 million to the private developmental disability system, for a total of $240.2 million. That figure includes:

  • $516,000 for continued growth in the number of people receiving services

  • $2.7 million for increased costs in providing services.

  • $6.4 million for the wage increase to direct care staff.

Those totals are offset by about $1.3 million in increased expectations for savings in residential costs and another million in savings from a reform initiative that didn’t start on time.

Moseley said all his figures were rounded off.

Deep in the background, BHDDH is quietly gearing up for a top-to-bottom analysis of Project Sustainability itself – a move applauded by DiPalma, providers, families and consumers. The lack of flexibility in services provided by Project Sustainability also has drawn the criticism of the court monitor.

Providers have said the funding formula does not allow them to plan on services for longer than three months at a time and makes it difficult for them to base their services in the community.

For example, Project Sustainability assigns staffing ratios according to the degree to which a person may be unable to do basic things independently, but doesn’t take into account the resources that person might need to get to a job – or hockey game – in the community.

Project Sustainability originally made it difficult for individuals to hold jobs in the community by providing work-related services only at the expense of other kinds of daytime supports.

In 2017, to comply with the work goals of the consent decree, BHDDH launched an add-on program of performance payments for providers for placing clients in community-based employment and for meeting job-retention goals.

DiPalma has said it is imperative that BHDDH finish a new rate model for private developmental disability services in time for Raimondo to introduce her budget to the General Assembly next January.

To satisfy the consent decree, the new design would have to focus on helping individuals lead regular lives in the community. Such a model would inevitably demand a greater financial commitment from the state and pose a new test of lawmakers’ values.

RI To Review "Project Sustainability" Funding Model For DD Services With Help From NESCSO

By Gina Macris

The state of Rhode Island has hired NESCSO, the non-profit New England States Consortium Systems Organization, to review the fee-for-service Medicaid funding structure used to reimburse private providers of services for adults with developmental disabilities since 2011.

The project, launched by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), represents a key step toward meeting the overall objectives of a 2014 consent decree which requires the state to create a community-based system of services to correct violations of the integration mandate of the Americans With Disabilities (ADA.)

The current fee-for-service reimbursement model, called Project Sustainability, incentivizes facility-based, segregated services, according to findings of the U.S. Department of Justice which led to the consent decree.

Project Sustainability, accompanied by $26 million in budget cuts effective July 1, 2011, resulted in drastic wage reductions among private service providers, but raising worker pay alone will not fix the problem.

Project Sustainability also was set up to fund staffing for groups of people engaged in activities in one place but didn’t provide for the degree of supervision or transportation needed to individualize services in the community on a broad scale, as required by the Olmstead decision of the U.S. Supreme Court. That decision re-affirmed the integration mandate of the ADA.

In sheltered settings, for example, the ratio of direct care workers to clients might have been set in the funding formula at 1 to 10, but additional staffing would be needed to support that many people in the community, according to language in the contract between NESCSO and BHDDH.

The contract says supplemental payments have been used to “address the deficiency in the payment rates.” These supplemental payments “are an increasing portion of overall payments, reflecting the inadequacy of the current rates,” the contract said.

It says BHDDDH is seeking technical assistance from NESCSO in reviewing the best strategies for achieving an integrated, individualized system of services that complies with both the consent decree and the Medicaid Home and Community-Based Services Final Rule.

The consent decree affects daytime services, with an emphasis on competitive employment for adults with developmental disabilities.

The Home and Community-Based Final Rule (HCBS) is Medicaid’s interpretation of what the ADA’s integration mandate should look like in practice. Unlike the consent decree, it addresses residential services, calling for options that enable clients to live in less restrictive settings than group homes.

BHDDH also asks NESCSO to help it develop an “optimal and balanced system of services and payments” that will promote individually-designed programs according to the preferences and direction of the consumers themselves.

As part of the overall picture, the design and oversight of individual service plans would be separated from funding and actual delivery of supports to protect the interests of consumers and comply with the HCBS Final Rule in so-called “conflict-free case management.”

The consent decree also calls for a separation between funding, case management, and delivery of services. Currently, BHDDH is responsible for both funding and case management.

The total contract, designed for an 18-month period, will cost nearly $1,366,000 in federal and state Medicaid funds. That sum includes the entire developmental disabilities project, a rate review for behavioral healthcare services, and technical assistance at Eleanor Slater Hospital in connection with developing outpatient services for patients.

A BHDDH spokeswoman said Feb. 28 that the amount to be spent in the current fiscal year on the developmental disabilities portion of the project, originally set at about $400,000, will be scaled back to $200,000, because the work did not begin as anticipated in January. The fiscal year ends June 30.

There is $500,000 budgeted for the developmental disabilities work in the fiscal year beginning July 1.

BHDDH director Rebecca Boss said the department “Is pleased to partner” with NESCSO.

“NESCSO offers BHDDH the expertise of the other New England states and brings a team with background in specialized population-based needs and solutions, financial expertise, analytical depth and knowledge of federal regulation, resources and compliance requirements,” she said.

NESCSO is a non-profit collaboration among the health and human services agencies of Rhode Island, Massachusetts, Connecticut, New Hampshire and Vermont and the University of Massachusetts Medical School. Through shared information and expertise, it works to promote policies and programs that will serve the needs of New England states in a cost-effective manner, according to its website.

State Sen. Louis DiPalma, D-Middletown, the chairman of special legislative commission studying Project Sustainability, said the review of the funding model will be “pivotal” in shaping the future of the private system of developmental disability services.

“I give the department (BHDDH) credit” for moving forward with the project, DiPalma said. NESCSO, led by a former Rhode Island Medicaid director, Elena Nicolella, is held in high regard, he said.

At the same time, DiPalma said it is imperative that the review of the funding structure begin immediately and be completed in time for Governor Gina Raimondo to submit her budget proposal to the General Assembly for the fiscal year beginning July 1, 2020.

Expert testimony already given to the Project Sustainability commission made it clear that a review of the funding structure was long overdue, DiPalma said. With BHDDH already taking that step, the commission might still say that a rate review should be conducted every five years, as recommended by healthcare consultant Mark Podrazik.

Podrazik is a principal in Burns & Associates, which was hired to help BHDDH develop Project Sustainability. Testifying in November, he made it clear that the state ignored some of the firm’s key recommendations, instead shaping the funding structure through a frenzy to control costs.

RI Parents: System Of Care Fails To Address Supervision of Adults With DD In Hospital Setting

Jane Sroka * all photos by anne peters

Jane Sroka * all photos by anne peters

By Gina Macris

Access. Quality. Safety.

Those are the three words chosen by officials of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to sum up their overarching goals in serving adults facing intellectual and developmental challenges.

But at a public forum in Warwick Feb. 5, Jane Sroka, the mother of a man with intensive special needs, said the reality falls far short of those three goals when adults with special communications and behavioral needs are hospitalized.

The Medicaid dollars to which Sroka’s son is entitled through Home and Community-Based Services funded through BHDDH stop at the hospital’s door.

“My son needs 24/7 eyes-on supervision at all times. It’s huge. It’s life and death. That’s what it is,” she said.

In the hospital, Sroka said, “I was with him 24/7. He was awake 24/7. I was awake, 24/7. That was tough. It’s grueling on everybody.”

You’re talking about putting safety first? This is safety first,” Sroka said.

Not providing that round-the-clock supervision, in her son’s case, would have been dangerous, she said.

It’s not that the nurses don’t care, she said, but “if I wasn’t there, they wouldn’t have a clue about what to do or how to do it or when to do it, or whatever. It’s dangerous. And it has to change,” she said. She said she knows she is not alone.

Gail Peet had a similar story. She said her daughter, 47, who is non-verbal, became extremely agitated when a feeding tube was inserted.

After her daughter was transferred to a nursing home, Peet said, she asked the staff to put a binding around the feeding tube to prevent her daughter from ripping it out.

The nursing home refused, on the grounds that the binding would constitute a “restraint,” Peet explained after the forum. The next morning, the staff discovered that Peet’s daughter had indeed ripped out the tube, which had to be re-inserted, causing her the additional pain of a second procedure.

In neither Peet’s nor Sroka’s case did there appear to be a plan for in-hospital or discharge care that addressed complications that could arise from individuals’ particular challenges as persons with developmental disabilities.

Rebecca Beaton

Rebecca Beaton

And Rebecca Beaton, who uses a wheelchair and must make a great effort to shape each word, said she, too, needs 24-hour care if she goes to the hospital because she has a speech problem and not everyone understands her. A support person seated next to her at the forum repeated her words for clarity.

John Susa, former chairman of the Rhode Island Developmental Disabilities Council and the father of a man with extensive needs, said there used to be a pool of state funds — outside the federal-state Medicaid structure — that was once used only in emergencies involving adults with developmental disabilities. He suggested that officials re-visit that idea.

Kerri Zanchi, Director of the Division of Developmental Disabilities (DDD),, stood at the podium of a meeting room in the Warwick Public Library, taking notes.

Kerri Zanchi

Kerri Zanchi

Medicaid separates Home and Community Based Services (HCBS) from hospital services to avoid duplication, Zanchi explained.

“But I hear you,” she told Sroka and Peet, that the situations they described were not about duplicate services.

Zanchi raised the possibility that an upcoming initiative, the creation of a “Health Home,” might open an opportunity to provide the kinds of supports that Sroka and Peet needed in the hospital and nursing home. A Health Home is a Medicaid-spawned concept for the management of services, not a bricks and mortar facility.

“It is so important for the individuals we love and support to have that consistency and continuity of care,” she said.

Earlier in the forum, Zanchi had explained the Health Home as an entity that would manage a program of individualized services around the unique needs and preferences of a particular person served by DDD.

FROM OLMSTEAD TO HEALTH HOMES


Medicaid created the Health Home option to separate the design and management of services from the funding and delivery of services. The goal is to avoid any conflict of interest that might compromise the quality of care.

The states must provide so-called “conflict-free case management” by 2022 to comply with the Medicaid Home and Community Based Services Final Rule, issued in 2014 to align Medicaid with the integration mandate of the Americans With Disabilities Act.

According to the 1999 Olmstead decision of the U.S. Supreme Court, the integration mandate says individuals with disabilities must have access to the supports they need to live regular lives in the least restrictive environment that is therapeutically appropriate – and that environment is presumed to be the community.

In line with Olmstead, as well as a 2014 consent decree in which Rhode Island has agreed to desegregate its daytime services for adults with developmental disabilities, state officials and the developmental disability community have embraced the idea of “person-centered planning,” which puts the needs and preferences of individuals at the core of any service plan.

But at the forum, Mary Beth Cournoyer, the mother of an adult son with developmental disabilities and a member of the Employment First Task Force, suggested “whole life” planning as a more encompassing term.

“How do we build lives? It’s 24 hours a day, seven days a week,” she said. The Employment First Task Force to which she belongs was created by the consent decree to serve as a bridge between the community and state government.

Zanchi said state officials will meet with their community partners, including families and providers, to ask them to help draft the design for a Health Home for adults with developmental disabilities before the application is submitted to the federal Medicaid program.

She said DDD hopes to have a Health Home up and running in about 12 months.

NEW WORKPLACE LAW AFFECTING SOME DD SERVICES

The forum also brought to light apparently unintended consequences of the Healthy and Safe Families and Workplaces Act, which went into effect last July 1, guaranteeing all workers get time off to go to doctors’ appointments and attend to other important personal and family needs. Companies with 17 or more employees are required to give paid leave.

Sue Babin of the Rhode Island Developmental Disabilities Council said that those who direct services for themselves or a loved one are receiving conflicting advice from fiscal intermediaries about whether the law applies to support staff for adults with developmental disabilities.

And some individuals who are advised the law does apply and are granting time off to their support staff are having problems finding substitute workers, Babin said.

Zanchi suggested a separate meeting with families that organize and direct their own services to discuss the impact of the new workplace law and any other inconsistent advisories they may be receiving from fiscal intermediaries, who control the individualized budgets the state authorizes to be spent on services for particular individuals.

RATE REVIEW GEARING UP

In an overview of changes at DDD, Zanchi announced that the division is about to embark on a review of its fee-for-service rate model for reimbursing private agencies that provide most of the developmental disability supports in state.

To that end, BHDDH has selected an outside consultant for the remainder of the current fiscal year and the new budget cycle beginning July 1.

Zanchi declined to name the contractor until a purchase order for services has been signed by the state purchasing office. She did say, however, that the consultant was not Burns & Associates, the Arizona-based company that helped a previous administration devise Project Sustainability That is the name for the existing fee-for-service model that doles out payments for daytime services in 15-minute increments that must be documented by each worker for each client served.

Zanchi said $500,000 for the consultant was budgeted in the current fiscal year, and an equal amount is in the governor’s proposal for the next budget.

To expedite the rate review, the contractor was selected as a “sole source” provider, without the months-long process or issuing a request for proposals and reviewing bids, Zanchi said.

NEW YOUTH AND TRANSITION ADMINISTRATOR

Zanchi announced that Susan Hayward, a veteran social casework supervisor, has been named to the new position of Youth and Transition Administrator, to coordinate a smooth shift for high school special education students moving into adult services.

Employment opportunities and other transitional servicesfor teenagers and young adults are a prime concern of the independent court monitor overseeing implementation of the 2014 consent decree, as well as an earlier interim settlement agreement affecting only youth and adults in Providence.

The 2013 interim settlement agreement addressed violations of the integration mandate of the ADA that involved a special education program at the Birch Academy of Mount Pleasant High School being used as a feeder program for a former sheltered workshop in North Providence called Training Through Placement. The agreement is set to expire July 1, 2020, at the discretion of the U.S. District Court.

BHDDH officials presented a PowerPoint of information covered at the public forum. To view it, click here.

The advocacy group RI FORCE (Rhode Island Families Organized for Reform, Change, and Empowerment) recorded the public forum and has posted the video, in three parts, on its Facebook page. To connect to the video, click here.

RI Governor's DD Budget Would Add $8.7 Million in Medicaid Funding For Wages, Higher Costs

By Gina Macris

Rhode Island Governor Gina Raimondo’s recently released budget proposal would add nearly $8.7 million in new funding to the system of privately-run services for adults with developmental disabilities in the next 17 months, through June 30, 2020.

Most of that overall $8.7-million-increase, $6.4 million in federal and state Medicaid money, would fund raises for workers of some three dozen private agencies that provide developmental disability services under contract with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The raises would take effect July 1. Funding for the added wages - an estimated 44 cents an hour – is carved out in the budget bill for Fiscal Year 2020 that Raimondo has submitted to the General Assembly.

The budget bill also requires that almost $1.6 million in federal-state Medicaid funds be earmarked for technical assistance to private providers changing from segregated care to community-based, integrated service to comply with a 2014 federal consent decree.

The current overall spending level for developmental disabilities, $271.7 million, would increase to $273.1 million for the budget ending June 30. In the next fiscal cycle beginning July 1, the spending ceiling would rise to nearly $280.9 million, including federal, state and miscellaneous sources of revenue.

The Division of Developmental Disabilities (DDD) draws more than half the resources assigned to BHDDH – which is currently budgeted for a grand total of almost $422.5 million. Under Raimondo’s plan, the bottom line for the entire department would grow to about $448.5 million in Fiscal 2020 – an increase of $26 million, including about $19.7 million in supplemental funding for the existing budget.

Developmental disability services are financed through the federal-state Medicaid program, with the federal government paying nearly 53 cents on the dollar.

The governor’s executive summary, however, tends to focus on the state outlay alone. It says $3.1 million in state funds would be earmarked to cover an existing deficit and an additional $3.3 million would be set aside in the fiscal year beginning July 1 for increased caseload costs.

Those budget items, combined with the state’s share of the $6.4 million proposed wage increase - $3 million – add up to $9.4 million, nearly twice the overall $5 million in new state tax dollars that Raimondo would apply to developmental disabilities for the remainder of the current fiscal year and the next one.

The state would have to use savings in other areas to fully fund Raimondo’s plan for developmental disabilities, but neither the budget language nor the governor’s narrative spells out which cost-cutting measures would fill the gap.

The first-quarter spending report for BHDDH put the projected deficit in developmental disabilities at a total of $7.6 million for the current fiscal year, including federal and state funding.

The updated report for the second quarter will not be ready until Jan. 31, according to BHDDH officials.

But at a recent press briefing on the budget, Rebeca Boss, the BHDDH director, said she is satisfied that the governor’s proposal will enable the department to balance its current budget.

Among other things, the plan would restore money in the current budget that the DDD otherwise would have saved if it had won federal approval for a “Health Home,” a Medicaid option featuring a managed-care approach that also provides for a third-party to coordinate services for individuals.

The Health Home would help DDD comply with a Medicaid rule for Home and Community Based Services which requires case management to be separate from funding or service delivery. Currently DDD is responsible both for funding and for case management, which Medicaid perceives as a conflict of interest.

Boss said BHDDH has not yet submitted an application for a Health Home option for developmental disabilities. The budget assumes that a health home plan for developmental disabilities will be approved and go into operation during Fiscal 2020, which begins July 1.

Medicaid will reimburse 90 percent of the state outlay for health homes for a maximum of two years. After that period, the reimbursement rate for health homes will drop back to the regular rate for Rhode Island, whatever it may be at that time..

To help close the current deficit, the governor recommended an additional $273,412 in state revenue for BHDDH to pay homemaker licensed practical nurses who work with adults with developmental disabilities. The Executive Office of Human Services granted them a slightly higher pay increase than BHDDH had budgeted and the General Assembly had approved.

In adding $3.3 million in state revenue for “caseload” expenditures for the 2020 fiscal year, Raimondo’s executive summary said she “accepts the Department’s (BHDDH’s) most up to date projections” on costs, “ensuring no changes to services for DD consumers and continued financing to improve achievement of consent decree mandated services.”

Last year at this time, Raimondo had proposed cutting a total of more than $18 million in federal-state funding from developmental disability services, with a spokeswoman for the Office of Management and Budget saying the proposed reduction was based on calculations made from “estimated growth rates in the cost of providing services.” She did not elaborate.

Raimondo, pressed by the independent court monitor overseeing the implementation of a 2014 federal civil rights consent decree, eventually restored the funding and pledged the state’s support of the work ordered by the federal court.

The consent decree requires Rhode Island to correct violations of the integration mandate of the Americans With Disabilities Act, reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, by ending its over-reliance on sheltered workshops and segregated day care.

This year, according to Boss, BHDDH submitted cost projections on the basis of actual claims, as directed by the Executive Office of Health And Human Services, rather than individual funding authorizations.

In the process of updating projections, the data was refined to remove claims that had been double-counted on Medicaid rolls of both BHDDH and EOHHS, according to the executive summary of the budget.

For Fiscal 2020, the governor’s budget summary highlighted three additional areas for savings:

  • ·A continuation of “residential rebalancing”, a multi-year effort to reduce the number of people in group homes, a cost-saving measure that also is intended to provide more “community-based placements such as shared living.” The budget projects $1.5 million in “residential rebalancing” in 2020.

  • Closure of one state-operated group home for an estimated savings of nearly $92,000. The staff in that location will move to other sites, reducing the need for overtime in the state-run system.

  • So-called “right sizing” of staffing at the state-run group home system to realize additional projected savings of $202,721. “Right-sizing” means staffing patterns will be reassessed and employees will re-bid jobs. This change is expected to reduce overnight staffing and further reduce overtime costs.