Judge Hails RI DD Progress But Calls For Critical Fixes

By Gina Macris 

For the first time since Rhode Island agreed a decade ago to correct civil rights violations affecting adults with developmental disabilities, people now routinely tell Court Monitor A. Anthony Antosh that their lives are better now than they were last year.

That’s a sign of success, said Chief Judge John J. McConnell, Jr. of the U.S. District Court in Rhode Island during a virtual hearing June 13 on the progress of a 2014 consent decree to reform past practices, such as restricting the work of people with disabilities to sheltered workshops.

Judge McConnell File Photo

Judge McConnell praised the “tremendous work” by the General Assembly and the state’s executive branch to dramatically increase funding for developmental disabilities, along with the roll-out of a community-facing system of services that went into effect July 1 of 2023.

At the same time, Judge McConnell said there are still some critical elements of the new system that must come into place for the state to fully implement the consent decree by the 2026 deadline, framing his compliments as “incentive to move forward, not to relax.”

Indeed, Judge McConnell plans to pick up the pace of his involvement in the short term. He gave lawyers for the state and the DOJ until July 12 to file plans for clearing the bottlenecks in the new system. Another court hearing is anticipated in August.

Antosh - file photo

Antosh, the monitor whom Judge McConnell appointed to track the progress of the reform effort, said in a recent report that he questions whether the state will be able to roll out high quality facilitation in time to meet the deadline for full implementation of the consent decree.

In looking at the positive steps the state has made, Judge McConnell contrasted the current status of the state’s efforts with the difficult period that followed signing of the consent agreement between the state and federal governments in 2014.

There were “years where the focus was lost and the state’s commitment was not obvious” for making constitutionally required changes to the service system, Judge McConnell said.

Among the progressive changes are increased community activity. About 84 percent of adults with developmental disabilities spend an average of nearly 16 hours a week participating in community activities, according to the most recent survey conducted by the Sherlock Center for Disabilities at Rhode Island College.

Transition Services Have Achieved Goals

For young people graduating from high school, coordination has improved between the local school districts, the state Department of Education and adult services, Antosh said.

The number of work experiences for high school students has increased and four of 14 who graduated in the last year went into paid employment, he said in a report. Antosh said the services that help young people make the transition to adulthood meet the criteria of the consent decree.

Although a workforce shortage among caregivers continues as part of a national phenomenon, the hike in wages for caregivers implemented last July means that Rhode Island has the lowest turnover rate in the nation in the field of direct care - at least in developmental disabilities, Antosh said. (Private-sector direct care workers in developmental disabilities make more than $22 an hour, on average. Beginning July 1, significant pay hikes will extend to other types of workers in community-based human services. Related state budget article here.)

Key Problems Remain

The remaining roadblocks to a fully realized program for people with developmental disabilities include:

• a lack of independent facilitators working with individuals to navigate the system

• an assessment process that does not yet capture all of a person’s needs

• new bureaucratic hurdles that prevent individuals from getting money from a new category of “flexible funding,” or “add-on” services.

The monitor’s biggest concern is that the state does not have independent facilitators in place to guide individuals through a new three-step assessment process and help them secure the necessary funding for a purposeful program of services.

These trained facilitators are critical in bringing all the pieces of a service system together in an individualized way to improve the lives of people with developmental disabilities, the monitor has said.

The state has budgeted nearly $2 million to hire 18 social workers to serve as facilitators in the next fiscal year, but the Director of the Division of Developmental Disabilities (DDD), Kevin Savage, said only two of them have begun working, as supervisors.

He said he shares “some of the monitor’s trepidation” about the facilitators. “The question is, are they going to be the right people,” Savage said. The facilitators will be funded through the Executive Office of Health and Human Services, not DDD.

The new three-step assessment process is not widely in place, Antosh said, and even when it is used, individuals do not understand how the more comprehensive sequence of questions and interviews is related to individual funding.

To fully comply with the consent decree, the state must get McConnell’s approval on the mathematical formula, or algorithm, that is used to translate needs for support services into individual budgets, according to one of Antosh’s recent reports.

The budgets must not serve to limit spending but to meet an individual’s needs and preferences, Antosh has emphasized.

When the new rate system and administrative structure was introduced last year, state officials said the more accurate assessment process would lead to a reduction in appeals of funding decisions. But the appeals continue.

The amount of money awarded on appeal is expected to be about $22 million in the current fiscal year, according to the May Caseload Estimating Conference. That projection is about $2,246,000 less than the last fiscal year. Last year’s $24.2 million was the highest awarded on appeal since 2015, when the amount reached $28 million, according to an email earlier this year from a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

As it is, participants have a difficult time accessing so-called “flex funding”, or add-on services, particularly employment-related supports, according to Antosh and Asst. U.S. Attorney Amy Romero, who represented the Justice Department. Romero said she knows former sheltered workshop employees who still haven’t seen the benefits of the consent decree in their lives, years after the workshops themselves have been shut down.

In May, the state reported that 348 persons had obtained add-on employment support, Antosh said, far below his expectations. The overall developmental disabilities caseload is about 4,300 people.

Individuals and families who direct their own services and have no links to provider agencies are at a heightened disadvantage in trying to get employment-related supports, Antosh and Romero said. About a quarter of the developmental disabilities caseload, or about 1,000 people, are in the “self-directed” category.

Antosh said individuals must not be forced to choose between between community activities and employment-related supports.

The monitor’s reports to the court give additional detail on clashes between the court’s intentions and the state’s interpretation of portions of the new service system.

The court intended that job coaching and job retention should be decided according to the needs of the individual, but those receiving services and their caregivers are being told there are time limits to these services, he said.

In March, Antosh wrote to the court that “the amount of hours of job coaching or job retention needed is unique to each individual.”

“This is an individual program decision, not a budgetary decision.” Antosh wrote in bold type in a report submitted in March.

The under-utilization of services is reflected in current spending, which is running about 17 percent under the original projections, said Brian Daniels, Director of the state Office of Management and Budget during the hearing before McConnell.

In reports to the court in recent months, Antosh said providers must file a new purchase order every time an add-on service occurs.

That means every time a participant goes to the gym with a caregiver, or goes to work with a job coach, a new purchase order must be filed for the transportation and the service of the caregiver.

And providers say that group home residents who stay home for whatever reason, including an inability to access add-on services, are funded at a lower annual residential rate now than they received a year ago. Even though their needs have not changed, they may have fewer staff at home. Residential services are not addressed by the consent decree.

Antosh, meanwhile, says he wants the state to simplify the bureaucracy around billing and reimbursements, echoing the complaint he had about the “administrative barriers” of the old system.

In addition, Antosh has said providers must be allowed to bill retroactively to July 1 of last year for “professional services,” which includes nursing, counseling, and some other services, because the state’s new billing system is not yet set up to accept those invoices.

Romero said the Justice Department is “cautiously optimistic” that the state will be able to comply with the consent decree in two years, but the DOJ remains concerned that money budgeted tor enhanced services, particularly employment-related supports, remains unused.

To read the monitor’s report dated June 10, 2024, click here

To read the monitor’s report dated March 25, 2024, click here

Judge Adds 2 Years to Oversight of RI DD Consent Decree

A. Anthony Antosh, Court Monitor, illustrates three stages leading to full implementation of consent decree, shown on right

By Gina Macris

A federal judge will retain jurisdiction over a civil rights consent decree until June 30, 2026 to ensure that a fully funded reorganized system of services has a positive impact on the lives of roughly 4,000 Rhode Island adults with intellectual and developmental disabilities (IDD).

The added oversight does not extend or revise the terms of the consent decree, signed in 2014, which requires that the state put into place all required components of an individualized, community-facing system of services for adults with IDD by June 30, 2024.

John J. McConnell Jr., Chief Judge of the U.S. District Court, labeled the additional two years of oversight an “addendum” to the consent decree in an Oct. 2 court order. He said that the oversight period will ensure that the funding, policies and a newadministrative framework required by the consent decree become firmly established.

In the court order, the judge also said that A. Anthony Antosh, an independent court monitor, will continue evaluating consent decree compliance until 2026.

At the same time, McConnell noted that he is stepping back from holding periodic public hearings on consent decree compliance but will be available should Antosh find reason for his intervention.

McConnell has been personally involved in overseeing the case since January, 2016.

More than two months ago, McConnell said that, despite the state’s “tremendous progress,” it was “abundantly clear that it will not be in compliance” on July 1, 2024, in terms of effecting positive changes in the lives of adults with IDD.

“Because we are able to recognize this a year in advance, the parties should get together with the monitor and negotiate an addendum to the consent decree to ensure substantial compliance at the quickest possible time,” McConnell said at a public hearing Aug. 1.

The monitor and lawyers for the state and the federal Department of Justice (DOJ) negotiated the addendum and met with McConnell privately a few days before the judge turned it into a court order.

A Decade Of Growing Pains

In 2014, Lincoln Chafee, then governor, signed a consent decree promising major changes for Rhode Island’s developmentally disabled population to settle a DOJ civil lawsuit alleging that the state’s segregated programs violated the Americans With Disabilities Act (ADA).

The state agreed to create a community-facing approach that put the needs of individuals at the center of thoughtful plans for employment and other services that enabled them to lead regular lives. The agreement is to expire June 30, 2024.

At the outset, the DOJ expected that a decade would be time enough for a new system of services to take hold and show results in the daily lives of the consent decree population. DOJ lawyers have testified that, in general, they want to see at least a year’s successful track record before they will sign off on an agreement like the consent decree.

  The first six years of the consent decree in Rhode Island were marked by piecemeal changes, the largest being the shutdown of sheltered workshops. But the funding and the bureaucracy underpinning a segregated system remained.

Then the COVID-19 pandemic halted progress and decimated the already underfunded and unstable workforce of the private agencies that the state relies on to provide IDD services.

The slowdown in reform became so serious that the DOJ asked McConnell in 2021 to find the state in contempt and to levy heavy fines. That request ignited a pledge by the state to take a number of steps, including a review of the rates it pays private providers and an overhaul of regulations to promote individualized, community-based services.

Reforms Accelerate

In his Oct. 2 court order, McConnell reviews, in meticulous detail, the state’s progress in achieving the goals of the consent decree and the myriad actions still to be taken if the state is to meet the June 30, 2024 deadline.

In the past year, the state, working with the community, has done intensive and laudatory work to plan the components of the needed infrastructure for a new system, Antosh wrote in a commentary that accompanied the court order.

 But the “majority of these plans have not yet been fully implemented,” he wrote, emphasizing the need for additional oversight in bold type. “The impact on outcomes and individual lives has just begun.”

Jobs: McConnell said the state has fulfilled Employment First policy requirements emphasizing competitive employment in the community and has met the number of job placements required in the consent decree.

The current budget provides for all those with IDD to get support in finding and keeping a job, as well as “discovery” activities and internships that help people with a limited variety of life experiences broaden their ideas about what kinds of work they might enjoy.

But not everyone can sign up today for those job-related supports. Making these services universally available is part of the implementation McConnell and Antosh said they want to see by next July 1.

The state, through legislative action, also has ended the sub-minimum wages that sheltered workshop employees and other adults with IDD were paid.

Not everybody in the IDD population wants a job. Those who want to opt out of job-seeking activities may do so through a “variance” process involving the monitor. About 100 people have taken advantage of it.

Assessing Needs: The state has created a new multi-step assessment designed to capture unique needs up front and provide funding accordingly. The old approach to assessment, based on a scripted questionnaire, assigned all 4000 persons with IDD into one of 20 funding categories that did not automatically provide for employment services.

Even though the needs of those with IDD remain relatively the same over a lifetime, individuals were sometimes recategorized into a lower funding level.

Other times, the assessment failed to capture medical or behavioral needs. In both cases, families and service providers were forced to file time-consuming appeals every year to secure and maintain added supports.

Critics said the assessment was being used to control the budget, not to serve persons with IDD. State officials have objected to those characterizations.

The new assessment keeps the original scripted interview, called the Supports Intensity Scale, adds a new questionnaire aimed at capturing supplemental needs, and finishes with an open-ended interview with individuals and families to ensure that nothing was missed in the first two sessions.

Not everyone has had the new assessment yet, but McConnell’s order says that the entire consent decree population must go through it by the end of June, 2024.

By that date, all members of the IDD population also must have access to an independent facilitator who will help them translate the assessment into an appropriate program of supports and services, McConnell said.

State Funding: Over the last three years, the state has spent total of about $120 million, more than half of it federal Medicaid dollars, to transform a system that incentivized the segregation of adults with developmental disabilities in sheltered workshops and day care centers.

 The $120 million total includes $75 million in the fiscal year that began July 1 to fund a new rate structure that promotes employment in the community and other integrated activities, according to Antosh.

Community Experience: McConnell said 80 percent of the adults with IDD participate in community activities, but the state needs to ensure that everyone eligible has regular experience in the community by the time the two-year oversight period concludes.

Transitioning to Adult Services: The consent decree also protects high school students with IDD aging out of school into adult services. McConnell and the monitor said the state has made progress in laying the groundwork for a seamless transition from high school to adulthood, but more needs to be done.

For example, transition plans more focused on jobs and careers must be implemented by June 30, 2024. The number of work internships for high school students must increase, and the state must show that by their 20th birthdays, 80 percent of youth with IDD have applied for adult services, with assistance.

Implementation Science Guides Monitor

 The process of societal change is slow, Antosh said, relying on implementation science to help put the consent decree in historical perspective.

Implementation science tracks the ways research translates into policies and practices in health and the social sciences and the long-term effect these changes have on the target population.

In a similar fashion, Antosh will be tracking the effect of the consent decree on Rhode Island’s IDD population, as shown in the graph above. It forms part of his commentary.

It took 25 years for the state to move from institutionalizing children and adults with IDD to a functioning community system in the early 2000s, as understanding grew that “individuals could have meaningful community lives and could be employed,” Antosh said.

In the first several years of the new century, Rhode Island gained a national reputation for having one of the best systems in the country.

“Then came several years of underfunding and decreasing services -a good system became significantly less so. This directly resulted in the Department of Justice investigation of Rhode Island and the Consent decree in 2014.” Antosh wrote.

Until the Rhode Island Consent decree was signed, the Integration Mandate of the Americans With Disabilities Act, reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, was brought to bear in the courts to make the case that persons with disabilities are entitled to community-based living arrangements.

The consent decree was considered a landmark event because for the first time, it applied the Olmstead decision to what individuals with IDD did during their waking hours.

With Employment First at the heart of its mandate, the the consent decree assumes that all individuals can work and interact in the community, “not in groups, but as individuals who have preferences and can make choices,” Antosh said.

He said implementation science indicates that it takes 10 to 20 years to fully implement new practices and change expectations among the public.

But the consent decree is still in the “early stages” of implementation, making the need for additional oversight important in ensuring that new policies and practices take root and begin to have an impact on the community.

The monitor has made it clear that that successful implementation of the consent decree will depend on individuals with IDD reporting on positive changes in their own lives by the time the added two-year oversight period ends.

To read the entire court order, click here.

To read the monitor’s commentary, click here.

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.”

'Our Lives Turned Upside Down' When Daughter Entered RI Adult DD System, Mother Says

Louis DiPalma, Rebecca Boss, and Kerri Zanchi watch A. Anthony Antosh of Rhode Island College present consumer and family perspectives on the state’s services for adults with developmental disabilities Photo by Anne Peters

By Gina Macris

A Rhode Island Senate study commission spent nearly two hours Dec. 12 laying out a catalog of strengths and weaknesses in Rhode Island’s system for helping people with developmental disabilities.

But in the end, the personal stories of two mothers, Amy Kelly of Smithfield and Martha Costa of Portsmouth, focused the commission’s attention on the crises now unfolding for at least several families who are at their wits end.

In the catalogue, their experiences come under “residential services-need for specialized medical/behavioral residential models.”

For Amy Kelly, that means that every single service provider in Rhode Island – about three dozen - has turned away her 21 year-old daughter, who is autistic, has behavioral problems, and functions in many ways as a kindergartener.

“So now what do I do?” Kelly asked in a letter to the commission chairman, Sen. Louis DiPalma, D-Middletown. Kelly is a widow, and works fulltime. Her daughter, Kayla, was asked to leave the Trudeau Center in Warwick because of injuries to staff.

For a month now, Kayla has been at home all the time and her problematic behaviors have intensified, Kelly wrote. “She is out of her routine, asking for “friends,” “yellow bus,” “trip,” and other favorite things and experiences that she misses..

Kelly has been forced to choose “self-directed” services, meaning that she must find her own workers,“which is pretty much impossible,” she wrote to DiPalma.

And the Home Based Therapeutic Services that helped Kayla outside of school hours while she was still in special education are no longer available.

“I cannot believe there are no programs in RI for families in this situation!” Kelly wrote. “When my daughter turned 21 in May everything in our lives turned upside down.”

Martha Costa * courtesy of Capitol TV

Martha Costa agreed. She attended the Commission hearing at the State House on behalf of her own family and five others in Portsmouth who have become friends as their children have faced behavioral challenges growing up and have aged out of the school system into purview of the state Division of Developmental Disabilities (DDD).

As the mother of a 22 year-old man on the autism spectrum, she said her experience has been that once young people with complex needs turn 21, “there is really no place for them to go.”

The family might be told to go to a hospital, but with the exception of Butler Hospital in Providence, a mental health facility, “the hospital is horrible, because it’s just more trauma going there.”

The 21 year-old daughter of a friend of Costa’s had meltowns after her mother – her primary caregiver and the one who organized her services - died in September. The woman’s daughter, who has multiple disabilities, was hospitalized because there was “nowhere for her to go,” Costa said. The young woman was “restrained, medically and physically. It’s heartbreaking,” Costa said.

“It’s lucky you have good parents who are helping these kids, but you know, we’re all getting older and we’re not going to be able to,” she said. The aging of parents, who are often primary care givers, is a broad concern among families, according to survey results.

“There are some kids who don’t have that parent support and they’re on the street,” Costa said. “That’s sad, when they can be a very productive part of our community.”

Kerri Zanchi, the state’s Director of Developmental Disabilities, thanked Costa for coming forward.

One of the biggest challenges in residential services, Zanchi said, is a dearth of specialized homes for individuals with behavioral and other complex needs, as well as a lack of therapists and other clinicians to give them the proper attention.

“There’s a huge need coming” as teenagers with complex disabilities leave schools, she said. “We need to know what that need is and we need to start working on it lot earlier than when they turn 21 and come into our system.”

Zanchi referred to the division’s Eligibility by 17 policy, which aims to give families, schools, and the adult system plenty of time to plan a smooth transition.

In the catalogue, one of the “challenges” the state officials listed in implementing the Eligibility by 17 policy is “resource and service difference for transitioning youth vs adult services.” In the summary that family and consumer representatives submitted, they commented that “transition from high school is a ‘nightmare.“

Zanchi continued her response to Costa. “We certainly recognize every day the crises we have to manage” in order to support the individuals involved and to try to grow the system’s capacity, she said.

And there are committed providers who are willing to help the state, but who also want to do that with the right staffing that will keep all individuals safe, Zanchi said. “We are all hands on deck. I know it probably doesn’t feel like enough,” she said.

Costa agreed. “ I understand what you’ve been doing and I know that everyone has been working hard . Still, it’s not enough,” she said.

Gloria Quinn, executive director of West Bay Residential Services, said her agency works very well with the state as a partner in exceptional situations, but it is extremely difficult as long as there there is a paucity of established expertise in the community that is accessible to the developmental disabilities providers.

“Very often we are creating something new, which takes an enormous amount of time,” Quinn said, and the funding is not enough. Most importantly, when the agency helps someone with increased needs it runs the risk of jeopardizing supports for other people, particularly in a residential setting, she said.

Peter Quattromani, President and CEO of United Cerebral Palsy Rhode Island, pointed to the low wages for direct care staff that frustrate all involved; those who love the work but can’t pay the bills, employers who can’t fill jobs, and consumers and families who can’t find suitable services.

“It’s an incredibly difficult job” , he said, and attracting staff is likewise very difficult, given the low wages.

Commission member Kelly Donovan, who herself receives services from DDD, had sparked the conversation by wondering aloud why those with serious behavioral problems have difficulty finding appropriate support.

She said she agreed with Quattromani and Costa, and she added another factor that she believes contributes to the problem: a societal stigma against those with a broad range of mental illnesses who exhibit aggressive behavior.

During the last month, commission members, representing the executive branch of government, private providers, and consumers and their families, were asked to complete a survey cataloging the strengths and weaknesses of the existing Medicaid fee-for-service system, called Project Sustainability.

The commission plans to use the results of the survey, named the “Current State Assessment,” to seek advice from outside experts and further the group’s deliberations in the future, according to a statement issued at DiPalma’s behest.

Directly or indirectly, a lack of adequate funding in various contexts permeated three summaries of the survey results, each one presented by a representative of each of the three segments of the commission. Transportation, for example, has become a bigger problem now that there is a greater emphasis on community-based services, which require more than the two daily trips usually allowed by individual funding authorizations. Families also cited difficulties of non-English speakers in getting information and services.

But Rebecca Boss, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, also said the developmental disabilities budget has increased significantly since 2015, and listed advances made in the last two years, including:

• $6.8 million for supported employment

• two annual wage increases for direct care workers (The average hourly pay for front-line workers is $11.36 an hour)

• the acquisition of a modern data management system

• an increase in staff for quality management, implementation of a federal civil rights consent decree and for Medicaid-mandated Home and Community Based Services, as well as assistance in maximizing the existing budget.

She described the funding needs of the system as “dynamic.”

“We are engaging in discussions with our partners about what those needs are,” Boss said. “Governor (Gina) Raimondo has demonstrated a willingness to look at the system and make adjustments in the budget as we go along. So this is the process that we’re currently working on and engaging in those conversations on a regular basis.”

Raimondo is to present adjustments for the current budget, as well as her proposal for the next fiscal cycle, during the third week of January.

Christopher Semonelli, a commission member and the father of a teenager with complex needs, commented on the origins of Project Sustainability, which seemed to him like system “in a death spiral, and there was basically a feeding frenzy as to how to continue the system; how to go after the available funds.”

“I don’t think the legislative base should be blamed” for cutbacks that launched Project Sustainability in 2011, “because there was a lack of advocacy, “he said. “Strong advocacy could have prevented that from happening. That is huge and needs to be built going forward.”

DiPalma had the last word. Semonelli “made a great point about advocacy, but he shouldn’t let the General Assembly off the hook,” DiPalma said. “This is where the buck stops.”

Read the summaries presented at the meeting. For the state’s assessment, click here. For consumer and advocates’ comments, click here. For service providers’ comments, click here.

Wait List For Vocational Rehabilitation Services In RI Starts Dec 1; Won't End Any Time Soon

By Gina Macris

There is “no quick fix” to the waiting list that will kick in for Rhode Islanders with the most extensive disabilities who apply for supports from the Office of Rehabilitation Services (ORS) after Dec. 1, according Ronald Racine, head of the state's jemployment rehab services. 

Because of restricted federal funds for rehabilitation services to Rhode Island, the waiting list is expected to grow to 2,620 individuals in a year’s time, although those now receiving services will not be affected.

About ten to 15 percent of future applications are expected to come from individuals with developmental disabilities, based on the current caseload. ORS currently serves 3,621 individuals with very significant, or “first priority” disabilities, including those with intellectual or developmental disabilities.

Racine, Associate Director of the Division of Community Services at the state Department of Human Services, said Nov. 22 that ORS might reduce the time anyone spends on the waiting list by collaborating with other state agencies, like the Department of Labor and Training or the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. 

Racine spoke at a public hearing at the Warwick Public Library Nov. 21 that he said was a pre-requisite to amending a federally-mandated state plan to formally create the waiting list under provisions of the Workforce Investment and Opportunities Act.

The trigger for the waiting list is a dramatic restriction in so-called federal vocational rehabilitation “reallocation” funds awarded by the Rehabilitation Services Administration (RSA), part of the U.S. Department of Education. In the past several years, these reallocation funds have averaged about $3.6 million, according to ORS officials.

For the federal fiscal year that began Oct. 1, Rhode Island sought $5 million in reallocation funds, but was awarded only $532,000.

While some of those attending the hearing asked what could be done to advocate for the restoration of the funds, Racine explained that this reallocation money is not Rhode Island’s to start with.

Rhode Island still receives a regular grant award under provisions of Title I of the Elementary and Secondary Education Act - $10.4 million for the latest federal fiscal year, which began Oct. 1, according to Racine.

But he explained that the reallocation money comes from states that must return funding to the federal government because they did not put up sufficient state dollars to support vocational rehabilitation. That pool of money is then reallocated by the RSA at its discretion to the other states.

This year, the RSA said it gave Texas all $33 million in reallocation funding it requested because of the impact of Hurricane Harvey. Racine told those attending the public hearing that the reallocation process was completed before Hurricane Maria devastated Puerto Rico, and he anticipated that the island would dominate in the next round of reallocation funding. That would mean a waiting list for vocational rehabilitation services would continue in Rhode Island, Racine said.

He said that ORS has been using reallocation money to support clients who are protected by a 2014 federal consent decree requiring the state to give adults with developmental disabilities greater access to regular jobs in the community.

ORS has notified the U.S. Department of Justice and a federal court monitor of the change in funding, and the resulting waiting list, Racine said at the Nov. 21 hearing. Neither the monitor nor the DOJ has commented in response, he said.

Separately, ORS faces the loss of $300,000 in federal funding earmarked for supported employment services. Supported employment services, like job coaching, also can be provided through the overall $10.4 million federal grant to ORS, according to Joseph Murphy, assistant administrator for supported employment. 

In a telephone interview Nov. 22, Racine elaborated. He said that the loss of federal supported employment funds does not directly impact an ORS pilot program that complements a similar project operated by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

ORS’ performance-based pilot program involves about 50 clients, with the last ones due to finish their program year in April, according to Murphy, who explained that they did not all begin at the same time.

Racine further explained that some changes may be made to supported employment services as a result of the performance-based program, but these would be programmatic rather than financial.

Exempt from any waiting list are about 520 high school special education students who have not applied for vocational rehabilitation services but who nevertheless are entitled to federally-mandated pre-employment and transition services.

These services include job exploration and internships, training in social and other skills necessary to prepare for the workplace, help with the skills of independent living, and counseling on opportunities for more comprehensive transition programs or post-secondary education, Racine said.

At the hearing, members of the State Rehabilitation Council, among others, expressed their concerns about the impending waiting list.

Willa Truelove, the Council chairperson, and Catherine Sansonetti, who is also a staff attorney at the RI Disability Law Center, both said the waiting list should be made public and that such transparency could help document the need for services.

Racine said the numbers on the waiting list can be put on the ORS Facebook page, but the names will be kept private.

(Click here to read an earlier article on the waiting list that has been corrected and clarified.).

Federal Court Hearing Sept. 16 Could Test RI's Compliance With DD Consent Decree

By Gina Macris

The status of Rhode Island’s compliance with a federal consent decree mandating integration of adults with intellectual and developmental disabilities is scheduled to go before U.S. District Court Judge John J. McConnell, Jr., on Sept. 16.

In response to McConnell’s active involvement in the case, which began in January, high-ranking state officials have begun an intense effort to lay the groundwork for compliance with the consent decree, which was signed in April, 2014.

On May 18 of this year, McConnell issued an order that held the state to numerous deadlines in July and August.

Whether the state has made sufficient progress over the summer may become clear during the upcoming review of the case in open court.

Prior to the Sept. 16 court session, the U.S. Department of Justice  and the independent court monitor can be expected to file written reports with the judge on their view of compliance issues, which they’ve done in the past.

They also may ask the judge to impose sanctions on the state if they believe it has not met the requirements of McConnell’s very prescriptive order of May 18.

The DOJ and Charles Moseley, the monitor, have been checking compliance with the consent decree on the basis of files they have selected from a list the state has provided of all individuals who fall under the purview of the agreement, about 3,000 people in all. The individuals are identified by a code that protects their privacy.

The case is extremely complex, with many related steps needed to achieve the long-term goal of the consent decree – to allow persons with disabilities the choice to participate as much as possible in regular employment and community activities. The agreement remains in effect until Jan. 1, 2024.

A July 1 Deadline for Supported Employment

One of those steps, spelled out in the consent decree itself, is a requirement that the state would find supported employment by July 1, 2016,  for all eligible individuals who left high school during the 2015-2016 school year. 

That population is estimated at a minimum of 74 individuals by the Rhode Island Department of Education (RIDE). 

In an interview Aug. 18, a state official could not say whether the employment requirement has been met because it does not have employment data as recent as July 1.

For now, the state is getting employment statistics from an “Employment and Day Activity Outcomes Survey” for adults with developmental disabilities that is done on a quarterly basis by the Sherlock Center on Disabilities at Rhode Island College.

The latest survey is a snapshot of what adults with disabilities were doing during their daytime hours in March, according to Jennifer Wood, Deputy Secretary of Health and Human Services.

Wood said statistics for July won’t be available until September.

Supports necessary for individuals to access regular employment vary with the needs of the person. They may include transportation, extra training that breaks down the job into small steps, or even a job coach who stays with the employee for the entire work shift. Typically, individuals with intellectual or developmental disabilities employed in the community work part time.

A Pay Raise For Direct Service Workers

During July, the state has submitted numerous documents that could have a bearing on the September court session, which is officially termed a “status conference.” 

Among the state’s filings is a progress report on what Wood has described as the “huge mathematical exercise” of delivering $5 million in pay raises- an average of $600 a year per person before taxes  – to direct service workers and job coaches.

Pay raises have been described as essential to stabilize a workforce of direct service workers who are asked to do demanding jobs for less than they would make at a fast food restaurant. Turnover ranges from about 35 percent to 80 percent annually, according to testimony before the General Assembly earlier this year.

At a recent community forum, Jane Gallivan, the interim Director of Developmental Disabilities, said workers should have checks by Oct. 1 that incorporate retroactive pay going back to the start of the current fiscal year, July 1.

The judge’s order gave the state until Aug. 1 to “appropriately increase salaries, benefits, training and supervision for Direct Support Professionals and Job Coaches.”

Performance-Based Bonus Plan Outlined

Another money issue involves government reimbursement paid to the  agencies themselves.

The state has filed a progress report with the court on plans to use $6.8 million in performance-based bonuses approved by the General Assembly in a two-phase program during the current fiscal year.

The program is initially planned to reward service providers when they place clients in jobs, after the workers have been employed for three months, and again at the six-month mark.  

These incremental bonuses would total an average of $15,750 per person, although the number of incentives and the dollar amounts may be adjusted, Wood has said. 

The state has not yet begun taking applications from providers to participate in the program, according to a spokeswoman for the Executive Office of Health and Human Services.

The incentive program is to be piloted until December with a limited number of private service providers.

The judge’s order required the state to implement the initial phase of the program by Aug. 1, and to turn in evidence that all providers have signed performance-based contracts by Dec. 31.

A Call For A New Reimbursement Model

McConnell also called on the state to implement a new reimbursement model by August 1 that is “sufficiently flexible to allow providers to be reimbursed for services rendered, including, but not limited to career exploration discovery services, vocational situational assessments, work trials, development of job seeker profiles, job search and placement, job training and support, support coordination, and transportation services.”

There is similar language in the consent decree, which specified that providers should be paid for job-related and job counseling work that is “not face-to-face with the client.”

Although performance bonuses will be an added “layer” of payment to service providers in the incentive program,  according to Wood, she has said that the current reimbursement model will remain in place.

“The unit service model is the unit service model,” she said in a recent interview.

For daytime services, this model requires providers to document the time workers spend with clients, face to face, in 15-minute increments. Providers are not paid for time clients are absent for any reason, even though they must staff their programs at the same level, regardless of varying attendance.

The judge’s order says the state must now have a “new service package design” that includes up-front individual financial authorizations for supported employment services.

Wood has said specific authorizations for supported employment services will be awarded to individual clients of providers enrolled in the performance bonus program – an estimated 200 people in all.

Except for that group, clients will continue to have to trade in other types of authorizations, like generic day services, to get employment-related supports, she said.

The State's Other Progress Reports

To comply with other requirements of the court order, the state has submitted:

• ·An overall project management plan involving the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), RIDE, and the Office of Rehabilitation Services (ORS) in the state Department of Human Services

• ·A transition timeline covering services to young people with developmental disabilities aged 14 to 21, including details on which agency and the type of worker who will provide the respective supports. 

• A comprehensive communications plan, including details on relaying the status of pending applications for adult developmental disability services to applicants and their families.

There are now 224 pending applications for adult services, a slight reduction from a backlog of about 237 reported in mid-May.

As of last Friday, however, eligibility workers had screened all but four of the 224 applications and assigned them to one of three categories; “likely eligible, likely ineligible” or “need further documentation,” Wood said.

This screening process sets the stage for decisions on applications in the first two categories to be made within 30 days, she said, enabling the state to retire the backlog by the end of September.

The screening also enables eligibility workers to promptly notify those who need to submit more information. 

In the past, those who needed to gather additional documentation might not have known it until their cases got to the top of the pile and were reviewed by the eligibility workers – an indefinite time period. 

The initial assessment makes the decision-making process much more efficient, Sophie O’Connell, a spokeswoman for EOHHS, said in a follow-up email.

EOHHS, which has taken over management of the Division of Disabilities at BHDDH since the beginning of the year, has heightened its oversight of the application screening process during the summer and used “data and performance management to keep our efforts on track,” O’Connell continued.

“The team met every day in the morning and the afternoon to set goals, review progress and problem solve as needed” during the screening process, she said.

At a hearing in April, the DOJ presented evidence that some individuals turning 21 were waiting extensive periods of time to receive notice of eligibility for adult services and then had trouble finding programs suited to their needs.

The consent decree requires that community-based services, including supported employment, be in place for individuals with developmental disabilities when they reach the age of 18. 

State law also says that individuals with developmental disabilities are eligible for adult services at age 18, although as a practical matter, it is not uncommon for them to remain in high school until age 21.

Nevertheless, the consent decree anticipates a seamless and individualized transition between school and the adult world.

McConnell will hear the status of consent decree compliance at 2 p.m. Sept. 16 in Courtroom 3 on the second floor of the federal courthouse on Kennedy Plaza in Providence, according to a notice in the case file. 

Judge in Disabilities Case to Mull Costly Sanctions Against RI

By Gina Macris

U.S. District Court Judge John J. McConnell, Jr. said May 2 he is prepared to take “swift and dramatic action” if the state of Rhode Island fails to adequately fund a 2014 consent decree intended to correct longstanding  violations of the Americans with Disabilities Act.

U.S. District Court RI

Nicole Kovite Zeitler, lawyer for the U.S. Department of Justice, said she plans to file a formal request  asking the judge to order the state to contribute to a “consent decree compliance fund” unless adequate funding is secured by “a date certain” through the budgetary process, now underway in the General Assembly.

Neither Zeitler nor the judge put a specific dollar amount on the cost of the consent decree, although McConnell said he wants to see the money in Governor Gina Raimondo’s budget proposal enacted “at a minimum.”

Zeitler and the state’s lawyer, Marc DeSisto, will take one week to decide whether they can jointly submit a proposed order to McConnell, according to an informal schedule the judge approved from the bench.

If the two sides cannot work together, the DOJ will draft its own proposal. McConnell will hear arguments and then make a decision. The date of the next hearing has not yet been set.

The developmental disability system in Rhode Island has been underfunded for a decade, Zeitler said.

Moreover, she said she is concerned that the cost of the consent decree is being misrepresented in budgetary discussions. 

Families fear that the state is shutting sheltered workshops and providing nothing in their place, and “we share those concerns,” she said.

Zeitler, meanwhile, said the cost of the consent decree is being characterized in budget hearings at the State House as $1.8 million, but the consent decree requires changes throughout the developmental disability system.

The sum of $1.8 million happens to be one line item in the budget of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for subsidizing one-time start-up costs incurred by direct service providers who convert to community-based services from the segregated employment and day programs that the DOJ found in violation of the ADA.

Impact of Budget Plan Unclear

In the next 14 months, Raimondo wants to put an additional $24.1 million into private agencies that provide most of the direct services to adults with developmental disabilities, but whether her budget actually will achieve that goal remains open to question.

The way the budget document is now written, $19.3 million of that sum would come from savings in residential costs as occupants of group homes move into less costly shared living arrangements with individual families throughout the state. The proposal counts on 100 group home residents making the transition by June 30 on a strictly voluntary basis and another 200 moving in the next fiscal year, which runs from July 1 to June 30, 2017.

In the last ten months, however, only 21 individuals have entered shared living arrangements, accounting for a projected savings of about $200,000 in the current fiscal year, according to BHDDH figures.

There are other uncertainties about the budget.

The independent monitor in the case, Charles Moseley, and the DOJ are looking for a reconfigured method of reimbursing service providers that would allow them flexibility to individualize community-based services while requiring that they meet performance targets.

The new reimbursement model would come with increased funding to the agencies, but BHDDH director Maria Montanaro told the Senate Finance Committee last week there isn’t enough money in the Governor’s budget plan to extend this methodology to all the service providers. Instead, Montanaro proposed a pilot program involving a “subset” of the service providers.

A spokeswoman for the provider agencies, Donna Martin, said she “respectfully disagreed” with Montanaro’s  approach. 

“If we target certain agencies (for pay hikes), we will not be able to recruit staff for any other program,”  said Martin, executive director of the Community Provider Network of Rhode Island (CPNRI) .

“We are facing an incredible staffing crisis,” she told the Senate Finance Committee.

 “Our staff are working minimum wage jobs. We are competing with McDonald’s” for workers, Martin said.

According to the current reimbursement rules, BHDDH pays service providers only for the time clients spend in direct contact with daytime support staff. That person-to-person interaction must be reported for each client and each worker, in 15-minute increments, throughout the day. Agencies are not paid when clients are absent, for whatever reason.

Job-scouting activities, in which a service provider might meet with a potential employer, are not part of the standard funding allocation package for individual clients.Clients who want employment supports must give up some hours in another category to get this funding. 

Until 2011, service providers received a set per-person allocation for a bundle of services that could be individualized, depending on a client’s needs.  Martin indicated that providers need a similarly flexible arrangement going forward to meet their obligations under terms of the consent decree.

Montanaro, meanwhile, said during the Senate Finance Committee meeting that a recent planning exercise came up with a $30 million price tag for applying a redesigned reimbursement model to all the service providers. She said that price tag was “impossible,” at a time when the department faced a $7 million deficit in the current budget.

Delays in Eligibility Decisions

Meanwhile, a backlog of applications for adult services that has caught the attention of the court could put additional strain on the budget that is not yet defined.

A BHDDH official told parents last week that there is a “very significant backlog” of pending applications for eligibility. At an average annual cost of $50,000 per client, an increase of 100 to the BHDDH caseload would add $5 million to the BHDDH budget.

BHDDH has been under pressure from the court to determine eligibility for young people promptly as they approach their 18th birthday, when they are defined by law as eligible for adult developmental disability services as long as they meet certain criteria.  

Since March, the Consent Decree Coordinator, Mary Madden, and other state officials have met with representatives of applicants for adult services who have experienced “inordinately long delays” in getting eligibility determinations as well as “receiving inadequate communication about the progress of their applications,” according to a report to the court submitted by the state last week.

“Those individual cases have been resolved,” the report said, but Madden told the court Monday the backlog still exists. She could not say how many applications are stuck in the pipeline.

Action Items Long Past Due

Many of the questions put to Madden and to Jennifer Wood, Deputy Secretary of the Executive Office of Human Services, had to do with pending consent decree action items that are long past due.

The state and the monitor were to have settled on a protocol for reporting compliance by Oct. 1, 2014, but it became common knowledge to dozens of individuals following the implementation of the consent decree that Moseley was having trouble getting access to BHDDH data throughout 2015.

Wood reported Monday that a confidential electronic data base allowing the monitor to track compliance according to each individual affected by the consent decree will go online in 2017, although an interim solution, in a quarterly report, will be available July 1.  

A Quality Improvement initiative was to have been launched by Nov. 1, 2014, but it is still waiting for the appointment of a quality improvement director. Funding for the position has been authorized. Each individual affected by the consent decree was to have an individual career development plan by Jan. 1 of this year, but those are not all in place.

The performance-based contracts that Montanaro said would be part of a new pilot reimbursement program with a portion of the service providers were to have been implemented system-wide by Jan. 1, 2015. 

A public education plan to explain the requirements and the philosophy of the consent decree was to have been up and running Sept. 1, 2014.

BHDDH officials submitted what they believed was the final version of the public education plan to the monitor on April 1, but Madden told the monitor Monday that “events of late have caused us to think how many more people need to be involved.”

She did not elaborate. BHDDH officials who hosted a “town hall” meeting with families and consumers in Warwick last week were met with a wave of hostile comments about the consent decree and disability services.

Judge Says RI General Assembly Shares Responsibility for Implementing Decree

By Gina Macris

Key elements of Rhode Island’s compliance with a federal consent decree aimed at correcting violations of the Americans with Disabilities Act depend on funding that has not yet materialized.

The funding issue surfaced repeatedly during day-long testimony April 8 before U.S. District Court Judge John J. McConnell, Jr. who is overseeing compliance with the consent decree, signed in April, 2014.

 Officials who took the witness stand referred often to two items in Governor Gina Raimondo’s proposed budget for the next fiscal year:  $5 million for wage increases to staff who provide direct care to the developmentally disabled and nearly $1.9 million for enhanced services to help a target group of about 75 people get jobs and gain access to non-work activities in their communities.

 Jennifer Wood, deputy secretary of the Executive Office of Health and Human Services, said, “My task is to ensure that when the legislature goes home in July, that budget is intact.”

To which McConnell responded:  “I hope the legislature understands it is equally as responsible as the Governor for compliance. The Court will take action against whoever in government fails to fund it,” he said.

Wood said she would be sure to convey the message.

On Tuesday April 12, the House Finance Committee is expected to hear the budget proposal for the agency principally responsible for implementing of the consent decree, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Nicole Kovite Zeitler, a lawyer for the Department of Justice, contested the assertion the state made in an April 1 status report that it is in “substantial compliance” with the consent decree. The decree resulted from DOJ’s investigation of sheltered workshops that employed people with developmental disabilities at sub-minimum wage.

Any increase in the number of people with developmental disabilities who have gotten jobs in the last two years has not been the result of any state efforts, Zeitler said.

Rather, “if people are working it’s because job coaches and families work really hard” to help them, Zeitler said.

“The system will be at a standstill until a rate redesign allows employers to actually pay direct service providers a living wage,” she told the judge.

A redesign of the reimbursement rates to private agencies is one of several compliance efforts that the state has in the planning stages, although those talks have been going on for nearly a year, according to A. Anthony Antosh, director of the Sherlock Center at Rhode Island College. The Sherlock Center provides technical assistance and guidance to BHDDH on implementing the consent decree.

None of the testimony in federal court on April 8 made it clear how much money it would cost to overhaul the current reimbursement rate system or whether Raimondo’s budget proposal to increase funding is enough to accommodate such a change.

Antosh, however, said that the state is spending about $15,000 for each person with a developmental disability who attends a segregated day program, about half what it costs for job coaching and other community-based services.

Zeitler noted that funding letters that go out to individuals with disabilities do not say anything about employment-related services. Rather the letters list other categories of services and the associated funding.

“They need to cash in their hours for day services to buy employment services,” Zeitler said.  Moreover, the rate for job-related services is twice as much as for day services, she said. 

“That’s why we need to move to a different system,” said Wood, the deputy secretary of the Executive Office of Health and Human Services.

Zeitler said that the consent decree requires individuals have meaningful options for community integration no later than their 18th birthdays.

Wood said “that is occurring, but sometimes there’s a delay in the handoff.”

McConnell, however, referred to a statement filed with the court by the Rhode Island Disability Law Center, which said clients had experienced delays in obtaining services up to a year after their 21st birthdays.

Wood said she was troubled by that statement, and had asked staff to follow up.

“I am not in any way saying that is acceptable,” she said.

She said it is not state policy to begin adult services at age 21, but “it takes time for practice to meet policy.” (State law says persons with developmental disabilities become eligible for adult services at age 18.)

Wood testified extensively about efforts at high-level interdepartmental coordination, especially when it came to generating data for the purposes of complying with the consent decree. In fact, Wood herself emailed the most recent set of figures to DOJ lawyers after midnight the night before the hearing.

Lawyers for the DOJ and Charles Moseley, the court monitor for the consent decree, have been pressing for an accurate census of the population covered by the consent decree as a pre-requisite for determining whether the state is meeting its compliance targets on a continuing basis.

At the end of the day, Zeitler and Moseley said they still need time to figure out whether the latest head count - about 400 more than the 3,000 reported last week - was accurate and unduplicated.

Wood said a chief problem in gathering the data was that young people and adults with developmental disabilities may receive services from one to three agencies that for decades have not shared confidential information with each other.

But in the past few months, Wood said, the Executive Office of Health and Human Services has coordinated a push to change that practice. “We are now one big happy data family,” she said.

Going forward, Zeitler said, the DOJ will be watching to see whether the state fulfills its promises, like having an improved reimbursement structure in place for private service providers by July 1. 

McConnell’s next review of the case is scheduled for May 2.

“For whatever it took,” McConnell told Zeitler, “it looks like you got people’s attention. I hope you don’t lose that, either in the short run or the long run,” he said.