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.

Conference Seeks Connections Between Business And Job-Seekers With Disabilities

By Gina Macris

A grass roots professional organization will bring Rhode Island businesses together with job seekers having  disabilities and employment specialists skilled at creating successful matches between the two at a conference in Warwick Sept. 28, just ahead of National Disability Employment Awareness Month in October.

“Creating Connections,” at the Radisson Airport Hotel on Post Road, will include a presentation by Feast and Fettle, the company which delivers freshly-prepared gourmet meals in Rhode Island and parts of Massachusetts, Connecticut, New Hampshire and Maine. Feast and Fettle was ranked one of Rhode island’s top workplaces by the Rhode Island Department of Labor and Training in 2022.

Amy Gonzalez

Amy Gonzalez, a former senior policy advisor at the U.S. Department of Labor, will give the keynote address. She has extensive experience at the state and national levels in improving employment outcomes for people with disabilities and is currently project manager for the federally-funded National Disability Employment Training and Technical Assistance Center.

Creating Connections is sponsored by the Rhode Island chapter of the Association of People Supporting Employment First (RIAPSE), an organization best known for promoting training and education among professionals helping adults with disabilities find meaningful work in the community.

But the organizers of the conference say they want to broaden their approach to show the benefits of an inclusive workplace, both to employers and job-seekers.

The conference will explore “how it is we can we address workforce development and economic development” in a common-sense way that meets the needs of employers while reducing turnover costs and promoting employee satisfaction, said Kiernan O’Donnell, who serves as Co-President of RI APSE with Kim Einloth.

Businesses that hire people with disabilities work with professionals like O’Donnell, who analyzes an employer’s particular needs and finds suitable candidates to clear bottlenecks in operations, with continuing support to both the employer and employee.

O’Donnell’s day job is Director of Day and Employment Services for the Fogarty Center, a private agency serving adults with developmental disabilities.

Einloth emphasized the broad, inclusive approach of the conference, saying it will feature a session on “wellness in the workplace.”

“Wellness in the workplace is a universal idea,” she said, adding that the organizers hope everyone can walk away from the conference with relevant information or ideas.

Einloth is Director of Human Services for the Town of New Shoreham and former Chief Operations Officer for Perspectives, a private agency serving adults with developmental disabilities.

In addition to wellness in the workplace, the conference will offer two other breakout sessions: one on navigating the effects that earnings could have on benefits for those with disabilities, and another on finding life satisfaction through work.

A closing panel discussion will include:

• Feast and Fettle’s Director of People Operations, Chris Smith, along with Jordan Andrews, a company employee

• State Rep. Tina Spears, D-Charlestown, South Kingstown, New Shoreham and Westerly, who is also executive director of the Community Provider Network of RI, a trade association of organizations serving adults with developmental disabilities

• Nina Pande, executive director of Skills for Rhode Island’s Future, a non-profit organization that aims to connect unemployed and underemployed Rhode Islanders with socially responsible, civic-minded employers, according to its website.

The moderator of the panel will be Jeannine Pavlak, executive director of neba (lower case), a non-profit organization in Massachusetts and Connecticut which helps people living with disabilities and other barriers to find fulfilling employment.

The conference will run from 12:30 to 4:30 and will be followed by an informal erehour-long networking opportunity. Registration has been extended to Monday, Sept. 25.

Conference fees are $35 for RI APSE members and $45 for non-APSE members, but O’Donnell encouraged those on tight budgets to apply for a scholarship at the end of the online registration process.

To register, click on the link: https://survey.alchemer.com/s3/7461935/RIAPSE

RI's New DD Services Begin Roll-Out

Anne LeClerc Explains New Assessment Process in Virtual Meeting Via Advocates In Action RI

By Gina Macris

After years of looking the other way, the Rhode Island General Assembly has funded comprehensive reform of the state’s developmental disabilities services.

What the new system will look like to the people that it will serve – individuals with disabilities, their families and agencies that provide services – has yet to be fully fleshed out. State officials are putting the final pieces together and explaining the changes to the developmental disabilities community.

But the overall outline of reform is clear, and the state has hired additional staff to communicate the changes and help with implementation.

As of July 1, state officials have been given the money to do the job: a $78.1 million reform package proposed by Gov. Dan McKee and approved by the General Assembly last month.

Services for adults living with intellectual and developmental challenges are funded through the federal-state Medicaid program, with the federal government supporting slightly more than half the cost.

In all, the Division of Developmental Disabilities (DDD) will receive $469.1 million during the current fiscal year, nearly $92.8 million more than the final allocation for the budget cycle that ended June 30. The DDD spending ceiling makes up nearly 70 percent of a total budget of $672.8 million for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

The new budget marks a watershed moment in the life of a federal court consent decree, signed in 2014 by then-Governor Lincoln Chafee and representatives of the federal Department Of Justice, which had filed suit to enforce the Integration Mandate of the Americans With Disabilities Act (ADA.)

A Capsule History

The agreement committed the state to improve the quality of life of adults who had been warehoused in sheltered workshops or day care centers., in violation of the ADA’s Integration Mandate. Except in rare cases, such settlements cannot be appealed.

But it has taken another nine years of dogged federal enforcement, as well as emerging advocacy at the State House, for state government to come up with the necessary funding and reorganize the bureaucracy to turn the system around.

For years, the state’s powerbrokers paid lip service to the consent decree, setting up pilot programs that were never expanded and adding pennies to the poverty wages of workers in private agencies that did the day-to-day work of implementation. Staff attrition grew to be the number one problem in providing services.

Then in 2021, Chief Judge John J. McConnell, Jr. of the U.S. District Court, started ratcheting up the pressure, issuing one order after another that dealt with caregiver wages and other issues.

Under threat of a contempt finding and hefty fines, the state produced a comprehensive action plan for consent decree compliance, which McConnell approved in October, 2021.

The Role of Advocacy

A former court monitor in the case, Charles Moseley, once said that judicial action can go only so far. Enduring change depends on the advocacy of the people.

While consent decree case dragged on before Judge McConnell, the developmental disabilities community shifted strategy at the State House, joining forces with dozens of other organizations to send the message that the chronically underfunded developmental disabilities system was just a microcosm of all Medicaid health and human service programs in the state.

For State Sen. Louis DiPalma, who became chairman of the Senate Finance Committee earlier this year, all the coalition’s voices shine the light on broad inequities in healthcare and human services.

A law enacted in 2022 with the leadership of DiPalma in the Senate and Deputy Majority Leader Julie Casimiro in the House has tasked the state’s health insurance commissioner with revising Medicaid reimbursement rates every two years. The first set of recommendations is due out in the fall and will be waiting for the General Assembly when it convenes again in January.

Beginning in 2016, when DiPalma pushed back against an impractical plan to pay for the consent decree by cutting group home costs, he has gained prominence as an advocate for adults with developmental disabilities.

From his earliest days as a legislator, he said, he has sought equity for everyday Rhode Islanders based on “facts and data.” DiPalma has served in the Senate since 2009.

The Power of the Court

Key facets of the latest funding for developmental disabilities can be traced back to specific court orders that McConnell has issued in the last two and a half years –as well as recommendations from an independent court monitor, A. Anthony Antosh, appointed by McConnell.

• An entry-level wage for direct care workers of $20 an hour, with an average rate of $22.14 an hour for more experienced caregivers. This pay bump, from a minimum of $18 an hour, costs $30.8 million, including $13.9 million in state funding, and the rest in federal Medicaid dollars. A court order issued Jan. 6, 2021 said the $20 rate must go into effect by Jan. 1, 2024.

• An additional $44.2 million from Medicaid, including $20 million from the state, to increase flexibility in providing community-based services available to adults with developmental disabilities. Until the monitor spoke up in a court session earlier this year, the state had planned to continue providing 40 percent of daytime services in day centers. The increased funding authorizes additional staffing for community-based activities anytime of the day seven days a week.

• $3.1 million, including $935,465 in state revenue, to reflect a last-minute projected cost increase for the developmental disabilities caseload calculated during the May Caseload Estimating Conference. (An earlier article citing $75 million in reforms did not take into account the results of the Caseload Estimating Conference.)

The Bureaucracy Matters

In the Caseload Estimating Conference, fiscal representatives of the House and Senate leadership and the governor convene with human services officials in public twice a year to do the math around the state’s public assistance obligations. There is a similar Revenue Estimating Conference.

The impetus for including developmental disabilities in caseload estimating came from one of Judge McConnell’s court orders.

Until developmental disabilities services were included in the Caseload Estimating Conference in November, 2021, budgeting for this segment of the population lacked transparency. Families and advocates approached each new session of the General Assembly with dread because of the uncertainty about sufficient funding.

Under the old system of service delivery, individual funding for adults with intellectual and developmental challenges – about 4,000 people - was made to fit into one of 20 boxes, and anyone who needed anything more had to file an arduous appeal.

Most of the appeals were granted, after service providers and families showed the individual really needed a particular service. But the added funding often lasted only for 12 months, and the appeal process began once again.

In the meantime, BHDDH officials were berated by lawmakers for constantly running budget deficits. At one point, BHDDH projected a $26 million deficit for the fiscal year ending June 30, 2018 because of extra individual funding granted on apppeal.

Changes Take Shape

During a recent interview, DiPalma, the Senate finance committee chairman, outlined additional features of the new state budget that will benefit all people with all kinds of disabilities:

• Increased access to the Rhode Island Public Transit Authority’s (RIPTA’s) paratransit program through $500,00 in vouchers for people who live outside the geographical catchment area for this service. DiPalma said a lack of transportation often keeps people from getting a job or engaging in community activities.

• Adoption of the Ticket-to-Work program, which removes limits on earnings of people receiving federal disability payments. This change is expected to boost enthusiasm among those who might fear losing benefits if they get a job.

In the new system, individuals will get the funding and services they need “up front,” said Anne LeClerc, Associate Director of Program Performance at DDD during a virtual public forum last month.

The state will supplement its standard assessment with a questionnaire to draw out any needs that might have been overlooked, instead of allocating a cookie-cutter funding level and waiting for an appeal.

The new approach will “make it better for everybody,” LeClerc said. “And every year, we’ll be doing an ongoing review to make sure that the funding is appropriate,” she said.

Appeals will still be an option, but officials believe the new approach will cut the numbers down significantly, she said.

In another big change, individuals will no longer have to give up any services to get employment-related supports. Instead, the reforms will make job supports available to all who want them.

State officials have insisted they will fully comply with the consent decree by the deadline next June 30, but even the rapid changes being made today probably will not be fast enough to meet the deadline.

LeClerc and others admitted it will take a year to phase in all the pieces of the new model with everyone eligible for services.

For example, LeClerc said the questionnaire intended to draw out any supplementary needs not captured in the basic assessment hasn’t been finalized yet. And the latest version of the assessment itself, revised by American Association on Intellectual and Developmental Disabilities during 2022, has not yet been put into use in Rhode Island.

While the interviewers have been trained in the new model, DDD officials indicated the revised assessment would not roll out until August at the earliest.

LeClerc said the state will need to collect the data from 500 assessments before it can devise a new funding formula.

The DOJ has said it requires at least a year’s smooth implementation of court-approved changes before it signs off on a consent decree.

A DOJ lawyer, Amy Romero, warned the state last December that it needed to bring a sense of urgency to its efforts to meet the deadline for full compliance, even as she praised officials’ stepped-up efforts in 2022.

Antosh, the independent court monitor in the case, is expected to file his assessment of the state’s latest efforts before the end of July.

DDD Expands Staff

To help with implementation of the consent decree, DDD has filled a year-long vacancy in the administrative position dedicated to employment-related support and made several other appointments. The budget sets aside $203,275 for eight new permanent positions dedicated to the consent decree.

Elvys Ruiz, who has more than 20 years’ experience in state service, was hired in May as Administrator for Business and Community Engagement. A native of the Dominican Republic, he is a former interim administrator of the Minority Business Enterprise Compliance Office at the Department of Administration and also has experience at the Department of Human Services and the Department of Transportation. Ruiz succeeds Tracey Cunningham, who left more than a year ago.

Six new DDD staffers also were introduced at the virtual public forum in June, including at least one who will be working directly with individuals and families who direct their own program of services, a segment that makes up one quarter of the caseload.

• Amethys Nieves was hired in May as Associate Administrator of Community Services to work on improving information and communication. She has degrees in psychology and social work and has experience and has experience in providing direct services and in development of healthcare programming.

• Johanna Mercado and Jackie Camilloni also have been hired as part of a communications team as coordinators of Community Planning and Development, with Camilloni focusing on individuals and families who direct their own services, a group that now makes up about 25 percent of the developmental disabilities caseload. Mercado is an academic librarian with degrees in political science and library science. Camilloni has 25 years’ experience at a privately-run organization serving adults and children with intellectual and developmental disabilities (I/DD). She also has worked as a state social worker at both the Department of Children, Youth and Families and DDD.

• Steven Seay is the new Coordinator of Integrated Community Services. He has worked in the human services for thirty years, with experience in developmental disabilities, nursing home social services, and adult protective services. Most recently, he worked in DDD’s Office of Quality Improvement.

• Kelly Peterson, a former DDD social worker and supervisor, has been hired as the new Chief of Training, Staff Development and Continuous Quality Improvement to oversee changes in professional practice required by the consent decree. She also has worked as a DCYF social worker.

• Peter Joly, who has worked in the mental health field for more than 20 years, has been hired as a Principal Community Development and Training Specialist. He also has experience providing services for adults with developmental disabilities.

• Cynthia Fusco, chief assistant to DDD director Kevin Savage, has been promoted to a new position as Interdepartmental Project Manager.

Next Steps

Judge McConnell has scheduled a public status hearing Tuesday, Aug. 1 at 10 a.m. The hearing will be accessible remotely. (He will meet with lawyers in chambers in late September, but that session is closed to the public.) To watch the August 1 hearing, go to the Court’s calendar page, enter the date of the hearing and select Judge McConnell’s name from the drop-down menu of judges. Click on “Go” to get to a link to instructions for public access to the hearing.

DDD, meanwhile, is holding in-person and virtual public meetings where officials have said they will add greater detail to the overview of the new system they outlined June 20.

A video recording of the June 20 public forum is on the Facebook page of Advocates In Action RI

Three informational sessions remain in July:

• Wednesday, July 19, 2023 5:00 PM to 6:30 PM, Rochambeau Library Community Room 708 Hope St, Providence

• Tuesday, July 25, 2023 1:00 PM to 2:30 PM, Warwick Public Library Large Meeting Room 600 Sandy Lane, Warwick

• Virtual public meeting Thursday, July 27, 2023 3:00 PM to 4:30 PM. Click here to register via Zoom.

Insurmountable Deadline?

By Gina Macris

An independent federal court monitor says there is “minimal likelihood” Rhode Island will achieve ultimate compliance with a long-running civil rights consent decree in 2024 unless all court-ordered changes to the developmental disabilities system are implemented by July 1 – three months from now.

The monitor, A. Anthony Antosh, submitted a status report on the case to Chief Judge John J. McConnell, Jr. of the U.S. District Court in advance of a public hearing April 27.

He said many changes are needed in the developmental disabilities system to increase employment and participation in community activities in keeping with the Integration Mandate of the Americans with Disabilities Act. In the end, these new experiences in the workplace and in the community will change lives, Antosh said.

A. Anthony Antosh

The state Director of the Division of Developmental Disabilities, Kevin Savage, expressed confidence in a recent virtual public forum that the state will meet the deadline for full compliance on June 30, 2024 but gave few details.

With less than 15 months remaining in the term of the consent decree, the monitor spelled out the ways the state is still in the “messy middle” of change, with few measurable results so far.

For example, in the year between October, 2021, and October, 2022, a total of 16 persons with developmental disabilities got jobs, bringing the total number of employment placements to 984 during the life of the consent decree, or 68 percent of the compliance target - 1456.

In addition, interviews conducted with 25 adults eligible for developmental disability services indicated that the consent decree, signed in 2014, has not yet impacted the lives of most people it is intended to protect. Only about 30 percent of those interviewed had a knowledge or understanding of the consent decree, Antosh said.

“This is not really surprising, given that BHDDH does not do direct communication with all individuals / families on a routine basis,” he said. Improving communication must become a priority, particularly in light of numerous changes that must be implemented during the next year.

Antosh said additional interviews will be conducted to monitor the effect of the consent decree on individuals receiving services. For the state to reach full compliance, at least two thirds those interviewed must report they have a “community-based life, achievement of personal goals, and satisfaction.”

The April 27 hearing will allow the court to clarify its position on details of implementation just before state budget talks shift into high gear in May for spending in the next fiscal year. The General Assembly is expected to consider hefty increases in funding and changes to the way developmental disabilities services are delivered in accordance with a rate review by an outside consultant.

“It should be noted that the State essentially agrees with all of the expectations and required actions,” Antosh said, but a lack of capacity has prevented it from moving faster to complete all the required changes.

A decade of chronic underfunding depressed the wages of caregivers and destabilized the developmental disabilities workforce until the state, pressured by the court, increased pay by about 40 percent in the past two years from an average of $13.18 per hour to $19.52. While a workforce recruitment initiative has shown some success in hiring and retention, the number of direct care workers has still not hit pre-pandemic levels, Antosh said.

The consultant for the rate review, the Burns & Associates Division of Health Management Associates (HMA-Burns), has recommended additional rate increases of about 22 percent, which would cost $57 million, according to projections made in January. Based on a court ordered minimum wage of $20 an hour for direct care workers planned for July, HMA-Burns has projected the average hourly pay will be $22.14 in the coming fiscal year.

But the system-wide changes necessary to comply with the consent decree involve a careful orchestration of many moving parts, including professional development and training. Antosh said the state must budget for training separately from the rate structure for direct care workers and others. In the rate review, HMA-Burns included time spent in training activities as part of a mathematical formula for determining hourly rates, but Antosh said that doesn’t cover the cost of the training that will be expected.

While state has been making mostly satisfactory progress in planning activities the last few months, the “ultimate criterion” will be the “quality of implementation,” the monitor said.

Antosh said BHDDH is in the process of hiring eight new staff members in the Division of Developmental Disabilities to help direct implementation efforts and also has received approval to hire a Spanish-speaking social worker. That change, which appears to carve out an exception to union seniority rules, responds to complaints from the Latino community that date back to the inception of the consent decree in 2014.

Some social workers already on staff will be re-assigned to high schools to help teenagers making the transition from special education to the adult service system, Antosh said.

The monitor laid out another major change he said is essential in ensuring that persons with developmental disabilities get individualized programs of services that help them lead regular lives in their communities.

Until now, the state has used a standardized assessment called the Supports Intensity Scale (SIS) for determining individual budgets from a menu of about 20 options, depending on a person’s degree ability to function independently – or lack of it. Programming has been fit into the budgets.

Antosh says planning for individualized services must come ahead of budgeting to ensure a “person-centered” approach in which the needs, preferences and goals of individuals drive the programming.

While the state has already agreed to make employment-related supports available to all by separating these services from core budget options, Antosh said the same must be done for community-based activities.

HMA-Burns recommends that all day programs, including center-based care and community activities, remain part of core budgets assigned by levels, or tiers of support determined through the SIS assessment. Transportation, overnight shared supports, and respite care also would be part of the core budgets, with individuals having the option of shifting funds between categories.

As an example of the trade-off, the rate review cited the hypothetical example of an individual who could choose to receive fewer hours of daytime services to get more transportation.

But the monitor said, in bold type for emphasis, that community-based activities “should NOT be subtracted from core individual budgets.”

“Development and expansion of community-based models for employment and community participation need to be a primary focus for 2023-2024,” he said.

Several factors related to the assessment and planning process will complicate the implementation of a “person-centered” approach:

• The state doesn’t yet have a budget for paying the independent facilitators or case managers

• A revised version of the SIS assessment to be used by facilitators was released by its developer only a month ago, in mid-March.

• The supplemental assessment questions are just now being rolled out in SIS interviews.

• Both the new SIS and the supplemental questions require a ramp-up period to be fully integrated into the assessment process.

In a workflow chart attached to the monitor’s report, the state indicated it plans to have all components in place by July 1.

The hearing will be streamed live before Chief Judge John J. McConnell, Jr. April 27 at 2 p.m. The Zoom meeting ID is 161 975 2551 and the Passcode is 651294. For a link to the court’s Zoom platform and an up-to-the-minute court calendar, click here

Find the latest Monitor’s report here

The monitor included attachments from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, the Rhode Island Department of Education, which is responsible for transition services for high school students with developmental disabilities; and a multi-agency report on coordinating funding sources for employment supports.

In addition, The Executive Office of Health and Human Services submitted a report on a pilot program for “conflict-free case management”, which will use the independent facilitators the monitor mentioned, and is required by the is Centers for Medicare and Medicaid Services for all Medicaid and Medicare recipients, not just those with developmental disabilities.

The HMA-Burns Rate Review Summary

BHDDH Workplans

RIDE Transition Action Plan Status

RIDE Transition Work Plan

BHDDH Communications Plan

Multi-Source Funding For Employment Services

Multi-Source Funding Graphic

Conflict-Free Case Management

RI BHDDH Seeks $20 Starting Wage For DD Workers

By Gina Macris

The state agency overseeing Rhode Island’s services for adults with developmental disabilities is asking for a $20 minimum hourly wage for direct care workers, effective July 1.

The hike was ordered by a federal judge in 2021 to go into effect by 2024, causing consternation in the General Assembly at the time. More recently, outside consultants concurred with the minimum $20 rate.

The request is part of an overall $430.1 million budget proposal for developmental disabilities that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has submitted to Governor Dan McKee.

McKee is to submit his spending and revenue plan for the state to the General Assembly on Jan. 19.

RI BHDDH

The BHDDH request for developmental disabilities would add $9.3 million to the current budget of $383.4 million to close a budget deficit in the current fiscal year, ending June 30. About $6 million of the shortfall comes from a state-operated network of group homes.

An additional $37.4 million would be needed to reach total funding of $430.1 million for developmental disabilities in the next fiscal year, beginning July 1.

Spending on developmental disabilities makes up nearly two thirds of the entire BHDDH budget, which is currently $597.1 million. For the next fiscal year, BHDDH is seeking nearly $621.4 million, an increase of of about $24.3 million.

Slightly less than half of BHDDH’s operating revenue comes from state tax dollars, with the rest funded by federal Medicaid money. The overall figures also include some other miscellaneous funding sources.

In a cover letter to the governor in November, BHDDH director Richard Charest said the “Division of Developmental Disabilities continues its commitment in complying with the terms of the 2014 federal consent decree and providing integrated employment and day services.”

A series of substantial wage increases is intended to help stem a worker shortage that prevents eligible adults from gaining access to services to which they are entitled, particularly during the the recovery from the COVID-19 lockdown.

Under pressure from the U.S. District Court, which oversees the consent decree, the General Assembly increased hourly wages from $13.18 to $15.75 in 2021, and then to the current $18.00, which became effective July 1, 2022.

Chief Judge John J. McConnell, Jr. ordered state to hit $20 an hour by 2024. And the outside rate reviewers included the $20 minimum wage in preliminary recommendations made public last September. They also recommend a minimum rate of $22.14 in the fiscal year that would begin July 1, 2024.

As much as the state has been criticized by providers, advocates, and consumers and their families during the last decade for underfunding developmental disabilities, adding more money will not solve all the compliance problems the state has with the consent decree.

 Since 2014, the Department of Justice and the federal court system have sought to oversee a cultural shift in the delivery of services which will enable adults with intellectual and developmental disabilities to live regular lives in their communities, exercising choice about where they work and spend leisure time.

In a hearing in U.S. District Court in December, a lawyer for the Department of Justice said the state appeared unlikely to meet a deadline in mid-2024 for full compliance with the consent decree. Amy Romero of the U.S. Attorney’s office in Rhode Island expressed concern about a lack of individualization or “person-centered-ness,” and inadequate accessibility to services in a number of categories, including supports for teenagers making the transition to adulthood.

Romero’s criticism, as well as that of an independent court monitor, stemmed only partly from a chronic shortage of underpaid direct care workers who make up the front line of consent decree compliance.

How the state spends the money, including the degree to which services are individualized, is entwined in the rate review by outside consultants that has been underway for nearly a year. The rate review - itself court-ordered – has not yet been finalized. It covers not only the reimbursement rates to private service providers but the state administrative structures governing the spending.

Preliminary recommendations from the consultants indicated the state wants to continue the existing fee-for-service system, now 11 years old, with many of the same administrative features, including billing for daytime services in 15-minute units and a relatively limited number of individual funding options.

One big change is a proposal to make job-related supports available to all adults with developmental disabilities as an add-on to basic individual budgets.

Officials are working to finish the rate review by the end of January, according to a newsletter of the Division of Developmental Disabilities (DDD) issued Jan. 13.

In the same newsletter, DDD announced that it will advertise eight new positions to help the state fully comply with the consent decree by mid-2024.

The expanded staff will “assist the Division in developing improved communication with the I/DD community and stakeholders, increasing our training capabilities, and enhancing our support for community access and the self-direction population.” (The self-directed population includes individuals and families who design their own programs – roughly a quarter of the caseload of about 4,000 individuals eligible for services.)

The newsletter offered no additional details about the new positions, nor were any immediately available from BHDDH.

The privately-run developmental disabilities system, which includes the self-directed group and private agencies running group homes and offering daytime services, is currently funded for $352.9 million, with about $173.4 million coming from federal Medicaid reimbursements. BHDDH wants $40.7 million more for the private system from both federal and state Medicaid funds, including about $2.9 million to cover a shortfall in the fiscal year ending June 30.

A parallel network of state-run group homes, currently funded for nearly $30.6 million, would need an increase of about $6 million to balance its budget for the current fiscal year, according to the BHDDH budget request. Funding for fiscal 2024, beginning July 1, would continue at the higher level, about $36.5 million.

The administration of former governor Gina Raimondo had tried to privatize the state group homes, but private operators made it clear they were in no financial position to take on the responsibility for additional residents. The plan also faced opposition from unionized state employees who staff the state system, called Rhode Island Community Living and Support (RICLAS). Governor McKee has made it clear he will continue to support RICLAS.

DOJ: RI Likely To Fail DD Compliance In 2024

By Gina Macris

At the current pace, the state of Rhode Island will not meet a 2024 deadline for complying with a 2014 consent decree intended to integrate adults with developmental disabilities in their communities, a U.S. Justice Department lawyer said Monday.

Amy Romero put the state on notice that it needs to step up its game if it is to meet the deadline on June 30, 2024.

She addressed state and federal officials at the conclusion of a two-hour remote access hearing Dec. 12 before Chief Judge John. J. McConnell, Jr of the U.S. District Court.

Over the last year, DOJ representatives have met with more than 60 people who receive services for adults with developmental disabilities and have found some of the same problems that existed when the consent decree was signed nearly a decade ago, said Romero, an Assistant U.S. Attorney in Rhode Island.

She said she is worried about gaps in the system and the plight of people who fall through the cracks, including:

• A lack of individualization or “person-centeredness” that enables individuals to take control over their own lives.

• A lack of transportation

• The people who once had integrated programs but are now in day centers

• Group home residents who can’t get out into the community because of a lack of staff.

• People who can’t get the services they need

• Self-directed family programs that rely on untrained parents as staff

• Families who lack the services and information they need in the transition from high school to adult programs.

Romero also said the DOJ was concerned about the slow and disjointed roll-out earlier in the year of:

• The Technology Fund, which makes smartphones and other devices available for adults with developmental disabilities

• The Transformation Fund, about $12 million to help private service providers and self-directed individuals and families launch innovative pilot programs promoting employment and community activities.

Romero said compliance with the consent decree must be a coordinated state-wide effort. The bureaucratic “process can’t get in the way of progress,” she said.

The court hearing delved deep into the details of numerous unresolved issues highlighted both by the DOJ and by an independent court monitor, who last month submitted a report to the judge with some 50 recommendations.

The monitor, A. Anthony Antosh, said only a third of those who are supposed to be protected by the consent decree are getting the same level of services as they did before the Covid-19 pandemic.

Judge McConnell made it clear at the start of the session that each one of the monitor’s recommendations has been incorporated into the court order he issued Dec. 6. (see related article.)

The order, with a series of deadlines for specific tasks, is intended to serve as a “guiding path for the next two years at a minimum,” he said.

McConnell’s choice of words left the door open to the possibility of federal oversight beyond 2024, although the hearing did not address what might happen if the state misses the deadline for compliance.

Antosh, meanwhile, said the primary purpose of Monday’s hearing was to “publicly put on the record what needs to be done” for the state to meet the standards of the consent decree and to discuss how to meet these deadlines for each task in the order.

It has been apparent to him for a long time that the state cannot comply without “major systemic change,” Antosh said.

He put the state on notice that the ultimate level of compliance will be assessed through independent interviews with recipients of services and their families on the impact the consent decree has had on them.

Much of the responsibility for compliance has fallen on Kevin Savage, Director of the Division of Developmental Disabilities at BHDDH. Romero said Savage and his staff cannot do all the work alone.

Among other things, McConnell’s latest court order directs the state to scale up the successful transformation pilots so they are available throughout the developmental disabilities system for the budget year that begins next July 1.

The order also said the state must approve funding for unique needs of consumers without making them go through the standard appeal process.

Neither a mechanism for bringing innovative programs to scale or a method for funding unique needs without the usual appeals process was spelled out in a rate review conducted earlier this year to help BHDDH plan its budget request to the governor.

Preliminary recommendations from the rate review are posted on the consultant’s website (here) but a final report has not yet been made to the court.

Antosh said he had wanted the rate review completed by Dec. 1, but more importantly, he wanted the budget information from the rate review ready to be incorporated into the governor’s proposal to the General Assembly in January and implemented in July, 2023.

Savage, the Director of Developmental Disabilities, said BHDDH has submitted the necessary budget information to the Governor’s office, and “I don’t think there will be any problem with implementation for July 1.”

The rate reviewers are “behind in responding to community comments,” he said.

Antosh had other questions about how the rate structure would support the consent decree, including ways it would simplify billing.

Savage said the new rate structure will include a group of core services, with employment supports and transportation funded as add-ons. There will be greater flexibility in moving funds around to fit individual needs, and he will work on “individualizing” budgets, Savage said.

Savage said he didn’t know how the rate review simplified billing. The new system will continue requiring providers to bill in 15-minute units for each client but would eliminate another wrinkle which until now has also required them to put in the approved staff-to-client ratio for each person in a particular setting.

Savage said eliminating the documentation of ratios was thought to be more important than changing the 15-minute billing unit. In the end, changes must be weighed against Medicaid funding rules, he said.

“Some things you just have to live with,” he said.

Antosh called for more specific information on ways the rate review would support the consent decree and how outcomes would be measured for individuals receiving services.

He also said adults with developmental disabilities will have conflict-free case management separate from the statewide plan now under consideration, at least in the short term.

The case-management model will follow recommendations of a court-ordered work group, Antosh said, without providing specifics.

The state promised a monthly written report to the court. McConnell also signaled he would hear progress updates in open court every other month.

Consultant Recommends Substantial Hikes To RI DD Rates; Public Comment Invited

By Gina Macris

The average pay of a direct care worker serving Rhode Islanders with developmental disabilities would jump almost four dollars to $22.14 an hour July 1 in a new rate structure recommended by a healthcare consultant to the state Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH).

The proposed rate structure would make Rhode Island’s direct care workers the highest paid of any developmental disabilities caregivers in 26 states, according to the consultant, the Burns & Associates division of Health Management Associates.

Photo HMA-Burns

Stephen Pawlowski, an HMA-Burns official, presented the preliminary recommendations in video meetings Sept. 28 and Sept. 29. HMA-Burns and BHDDDH will accept public comment until Oct. 24 before finalizing the recommendations.

In compliance with a federal court order, the state has agreed to pay direct care workers a minimum of $20 an hour by 2024. To follow the state fiscal year, which begins in July, the new rate would become effective six months earlier than the court deadline. The $20 minimum means the average hourly pay will be $22.14, Pawlowski said. (see graphic, above)

Preliminary recommendations of the HMA-Burns also include significant increases in many other rates as part of a continued fee-for-service reimbursement structure for private service providers that has been in place for more than a decade.

Service providers, consumers and their families, and even a legislative commission have called for alternatives to fee-for-service reimbursements during the last several years.

Three dozen private agencies form the backbone of Rhode Island’s developmental disabilities system. The state relies on them to meet the requirements of a 2014 civil rights agreement mandating a network of individualized community-based daytime services by June 30, 2024 in accordance with the Integration Mandate of the Americans With Disabilities Act (ADA).

DELAY IN PART OF RATE REVIEW

A federal judge set a Dec. 1 deadline for completion of the rate review, but Pawlowski said the portion that deals with individual assessments and individual budgeting cannot be finished until mid-2023.

In August, an independent court monitor said this portion of the rate review should be completed by Oct. 31, underlining his recommendation in bold type in a report to the court.

The process and timeline involving assessments, service plans and developing individual budgets is “one of the most critical aspects of the transition to high quality person-centered practice,“ but the way these elements connect with each other is ‘‘poorly understood,‘‘ said the monitor, A. Anthony Antosh.

‘‘Person-centered practice‘‘ refers to a professional approach that that puts a client’s needs and preferences first in keeping with with the consent decree and the ADA.

Antosh recommended the state do a “comprehensive review“ of its use of the current assessment tool, the Supports Intensity Scale (SIS), citing continued problems with inaccuracies in the results.

The state made it clear a year ago that it will continue using the SIS, but during the recent presentations, the HMA-Burns spokesman , Pawlowski, that the publisher is in the process of revising it.

The second edition of the SIS is expected in January, 2023, he said. It will be incorporated into the new rate structure by mid-year, he said. The graphic below lays out additional details.

REVENUE HIKE FOR PROVIDERS

Overall, the various rate increases would hike revenues for private service providers 20 to 25 percent above current levels, Pawlowski said.

Part of the increase in private agency revenues would come from funding employment-related services, more costly than other types of daytime supports, as a separate add-on allocation.

It remains unclear how much one-on-one time with a direct care worker an individual would get under the proposed new rate model. One-on-one staffing is considered important for community integration.

Pawlowski was asked whether someone choosing one-on-one staff time exclusively would use up their budget allocation faster than someone in a small group. The short answer is “yes,” he said.

Anne LeClerc, a BHDDH official, added quickly that “it depends” on a person’s need and funding level.

On an hourly basis, the rate for one-on-one supports in the community would increase from $37.88 to $65. Not everyone will have a budget big enough to pay for one-on -one staffing for an extended period of time.

One caveat is that one-on-one staffing will be available to all who seek competitive employment in the community, regardless of the size of their individual budgets, BHDDH spokesman said.

Final answers to questions about the availability of one-on-one staffing will be directly linked to the way the new SIS version defines individual need and the funding that results from that definition.

The new system also includes a range of reimbursement rates for group supports in the community involving no more than three people for each worker.

Center-based care will continue, with its own range of reimbursement rates. Centers would be used as gathering places in the morning to prepare for community activities and places for daytime meals and personal care, Pawlowski said.

15-MINUTE BILLING UNITS

During the presentations, Pawlowski said new rate structure will continue 15 minute billing units for daytime services, giving consumers the “flexibility” to “mix and match” their choice of services and service providers.

Private agency providers for years have complained that the administrative cost and time used to bill in 15-minute increments according to staffing ratios detracts from their ability to provide the services themselves.

In one of many court-ordered activities, a cross-section of state officials and community representatives has studied 15-minute billing and found it burdensome, recommending that the 15-minute unit be replaced with one or two rates for community staffing lasting three or four hours at a time.

Pawlowski said the new model would reduce the administrative burden by eliminating the requirement to account for staffing ratios within each 15-minute billing unit.

Reimbursement tables in the proposed rate structure assume there will be five levels of funding, as there are now.

The funding levels are largely based on a person’s perceived ability or inability to complete the tasks of daily living, with the “tiers” of funding running from A, the lowest funding, to E, the highest.

“SELF-DIRECTED” CONSUMERS

About a quarter of consumers receiving developmental disabilities services do not rely on private agencies but direct their own plans, mostly with help from their families.

They are responsible for hiring direct care staff, but a fiscal intermediary handles payroll and helps them stay on track with their budgets.

Going forward, Pawlowski said, fiscal intermediaries will be limited to payroll services.

Support activities will become part of case management - a service now under review for all health and human service departments governed by the Executive Office of Health and Human Services to ensure that Rhode Island complies with federal case management rules.

The removal of support services from the role of the fiscal intermediaries will result in a slight rate decrease, Pawlowski said.

But some fiscal intermediaries listening to the presentation online said the two functions can’t be easily separated.

RESIDENTIAL OPTIONS TO WIDEN

Reimbursement rates would increase substantially for residential services except for the largest group homes, with six or more residents, where the rate reviewers assumed an economy of scale, Pawlowski said.

A few of the largest group homes would see a slight decline in funding, he said.

Rates for shared living, which Pawlowski said have remained the same since the program started, will get substantial increases. Shared living providers host adults with developmental disabilities in their homes.

For the first time, there will be an enhanced reimbursement rate for hosts who also provide all the day services for the people in their homes.

Established provider agencies that now oversee individual shared living arrangements will be required to make monthly visits to each home, Pawlowski said.

There are two new categories of residential services:

• Supervised living, a shared service for those who don’t need 24-hour care and live near each other, like residents with separate apartments in the same building who are visited by the same “floating” staffer as needed.

• Room and board arrangements in which an individual with intellectual and developmental disabilities has a roommate who is not the homeowner.

The proposed reimbursement scale also provides for “remote services” in which a worker can check in electronically and follow-up with an in-person visit if needed.

Recordings of two presentations and a packet of information on the proposed rates and other related materials have been posted to the BHDDH website at https://bhddh.ri.gov/developmental-disabilities/initiatives/rate-and-payment-methodology-review-project/public-review

Written comment from the public will be accepted until Oct. 24 at bsmith@healthmanagement.com

Graphics by HMA-Burns

RI APSE To Host Session On Supported Employment Successes; State To Present First Look at DD Rate Review

(This article was updated Sept. 29 to include details for accessing two online rate review sessions. )

Rhode Islanders with developmental disabilities who have received supported employment services over the last six years, their families and the professionals who support them are invited to share their experiences Sept. 29 in an online “community conversation” intended to help shape job-related supports in the future.

The Rhode Island Chapter of the Association of People Supporting Employment First (RI APSE) will host the meeting with the aim of highlighting the successful strategies of pilot programs funded by the Division of Developmental Disabilities (DDD) over the last six years in the hope of informing the next wave of job-related services.

The session has the support of a federal court monitor who seeks to promote compliance with a 2014 consent decree requiring the state to help find competitive employment in the community for adults with developmental disabilities.

The meeting, at noon on Thursday, will be facilitated by Jeannine Pavlak, a board member of the Massachusetts Chapter of APSE who has 32 years’ experience providing supported employment services to people with disabilities.

Pre-registration is required for the session. To pre-register, click here.

Reminder: DD Rate Review Recommendations To Be Aired

Meanwhile, on Sept. 28 and Sept. 29, consultants will make two presentations of preliminary recommendations for new reimbursement rates for private providers of developmental disability services that are intended to help the state comply with the consent decree. No pre-registration is required for these online sessions.

The first, with technical details aimed at providers, is on Sept. 28 from 12:30 to 3 p.m. To join, click here. Update: There is a meeting passcode and it is 186251, according to a BHDDH spokesman.

The second, for consumers, families and the community, is Sept. 29 from 1:30 to 3:30 p.m. To join, click here. (The link allows listeners to join using internet audio and also gives two other options for access. )

Interested stakeholders will have until October 21, 2022 to submit comments. Recordings, materials, and instructions for submitting comments will be posted after September 29 on the website of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. To go there, click https://bhddh.ri.gov/developmental-disabilities/initiatives/rateand-payment-methodology-review-project.

$2.5 M Unused For Lack of RI DD Jobs Program

CVS Trainee - File Photo

By Gina Macris

This article was updated Sept. 10.

A total of $2.5 million dedicated to helping adults with developmental disabilities find new jobs remains unused because the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) hasn’t yet decided on a program for spending the money..

 A department spokesman has clarified an earlier statement about the amount of money lacking a spending program.

In addition, the Division of Developmental Disabilities (DDD) is still seeking a replacement for the chief employment administrator, who left May 1.

The lack of readily available BHDDH funding dedicated to expanding the number of job placements was disclosed by the Director of Developmental Disabilities at a virtual public forum in August.

The situation represents one factor threatening the promise of a 2014 federal court consent decree to change the lives of people who once spent their days in sheltered workshops or day centers cut off from the rest of the community.

A parallel issue at the top of the list of concerns of an independent monitor is a shortage of skilled workers who assist people with disabilities to find meaningful jobs and expand their activities in the wider community.

The workforce shortage has taken on heightened urgency since the monitor recommended last week that the U.S. District Court accelerate recruitment of workers and possibly impose multi-million dollar fines against the state for noncompliance of the consent decree. (See related article.)

Until a new DDD employment program is adopted, adults with developmental disabilities must either seek state-sponsored employment services funded outside BHDDH or reduce other types of BHDDH service hours to pay for help finding a job.

Limitations on employment supports built into the current developmental disabilities system are part of a comprehensive review now underway of reimbursement rates for private service providers and administrative barriers to integrated services,

The 2014 consent decree anticipated that by 2022 – eight years later – Rhode Island would be scaling up pilot programs of supported employment that would reach some 4,000 people.

But BHDDH has never scaled up. Its first pilot program emphasizing individualized employment supports began in 2016 and underwent several iterations until the final version, the “Person-Centered Employment Performance Program 3.0” ended June 30.

The DDD director announced in February that the program would not be renewed but did not explain the reasons.

At the same time, the director, Kevin Savage, hinted at frustration on the part of the chef administrator for employment services, Tracey Cunningham, saying that she would be “leading the charge” in designing a new supported employment program “if Tracey stays with us, and puts up with us longer.”

But Cunningham, Associate Director for Employment Services since 2016, announced her departure in early April. BHDDH has posted the position twice but has not yet found a replacement for Cunningham.

The BHDDH spokesman could not say why a new supported employment program has not yet been put in place but said the “the DD team is meeting with stakeholders to determine a spending and engagement plan.”

Job Placements Fall Short

In an August 29 report to Chief Judge John J. McConnell, Jr., the independent monitor, A. Anthony Antosh, documented the state’s limited capacity to serve adults with developmental disabilities.

For example, 23 of 31 agencies serving people with developmental disabilities said in a survey they had to turn away clients or stop taking referrals between July and December of 2021 because they did not have the staff to provide services,

By July, 2022, the state had found jobs for only 67 percent of the consumers that it had promised in the consent decree – 981 of 1,457. (The new-job totals span the entire term of the consent decree, whether or not a particular individual is currently working.)

Antosh said that job placement numbers have remained flat throughout 2021 and 2022, increasing by only 17 in a 12-month period.

In general, he described the developmental disabilities system as being in the “messy middle,” borrowing a phrase from Michael Smull, a developmental disabilities expert on system change.

Antosh said elements of the system desired in the future have been defined, and some individuals are beginning to see progress. But he said most still face the restrictions of the current system, “which needs to be funded and maintained while the future is being built.”

Funding will depend on the results of the ongoing program review that is now underway and how the recommendations will be received by the governor and the General Assembly.

Rate Review To Finish Nov. 1

Under court order, BHDDH moved forward with the comprehensive review, hiring Health Management Associates, the parent company of Burns and Associates, earlier this year. Burns and Associates helped the state a decade ago to implement the current system, which the DOJ found violated the Integration Mandate of the Americans With Disabilities Act. (Burns & Associates says the state did not implement its recommendations for that program.)

The DD director, Kevin Savage, said the review will be completed Nov. 1, a month earlier than expected. He told a public forum in August that he plans to schedule another public meeting shortly after the review is completed to gather feedback from the community before the BHDDH budget goes to the Governor, who must present a proposal to the General Assembly in January.

The review is expected to address not only funding issues but controversial administrative features that the monitor says are barriers to a community-based network of services, starting with the eligibility process.

For a decade, BHDDH has used the standardized Supports Intensity Scale (SIS), a lengthy interview process, to determine the intensity of a person’s disability and assign one of five funding levels for services.

Antosh has pushed back against the state’s stated intention to continue using the SIS, saying it needs yet comprehensive review. Despite the re-training of interviewers in 2016, families still report the SIS does not result in the funding necessary for needed services. And they have complained for years that they sometimes felt humiliated and emotionally drained by the SIS interviews.

The state has developed a supplemental questionnaire intended to improve the accuracy of the SIS, but Antosh said very few families report that they have seen it or understand its purpose.

The families of young people applying for adult services for the first time “continue to report being overwhelmed” by the process, which the state has promised to streamline. And families also generally don’t understand how to appeal a funding decision they believe is inadequate for the services their loved one needs, Antosh said. He recommended that intensive training of social caseworkers continue about communicating new policies to families.

Administrative Barriers To Integration

Antosh’s report also outlined the concerns of service providers about some features of the reimbursement rules, including:

• A requirement that they document the time each daytime worker spends with each client in 15-minute increments, a time-consuming and costly process.

• Another rule that dictates staffing ratios for different kinds of activities, which sometimes results in results in group activities in the community instead of individualized experiences.

Antosh reiterated recommendations of a workgroup on administrative barriers that said:

• The ratios should be replaced with reimbursement rates which allow workers to have 1,2, or 3 clients in their care

• Documentation of worker time should be done in three or four-hour units

Antosh said he expects the reviewers will reach conclusions that are similar to the workgroup. He made numerous other detailed recommendations in the 50-page report.

With the consent decree set to expire in 22 months, on June 30, 2024, Antosh said that all of his recommendations must be “fully implemented with urgency,” using boldface for emphasis.

All the state’s reforms eventually must be approved by the Court.

Read the monitor’s August 29 report here.

Read the monitor’s Sept. 1 addendum here.

RI DD Employment Chief To Join AccessPoint RI

By Gina Macris

Tracey Cunningham, a key figure in Rhode Island’s employment efforts for adults with developmental disabilities, will leave state service to become head AccessPoint RI, a private non-profit provider of services to children and adults with intellectual and developmental (IDD) challenges.

pHOTO ribhddh

She will succeed longtime CEO Tom Kane on May 2, according to an open letter on the agency’s website from the chairwoman of the AccessPoint Board of Directors.

Cunningham’s departure from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) comes at a critical time in the implementation of a 2014 civil rights consent decree, which emphasizes “employment first” for adults with developmental disabilities.

With a 2024 deadline looming for full implementation, Rhode Island faces a severe shortage of the workers needed to meet the employment goals spelled out in the consent decree. To reach full compliance, the U.S. District Court judge overseeing the consent decree has ordered the state to overhaul the entire service system for adults with intellectual and developmental disabilities.

Cunningham’s boss hinted earlier this year that she might be leaving BHDDH.

At a virtual public forum Feb. 9, Kevin Savage, Director of the Division of Developmental Disabilities, said Cunningham would be “leading the charge” in implementing any new supported employment program in the next fiscal year “if Tracey stays with us, and puts up with us longer.”

Savage was responding to a viewer’s question about the future of supported employment services at BHDDH. The third version of a Person Centered Supported Employment Performance Program (PCSEPP) expires June 30.

Savage said that program probably will not be renewed but funding for supported employment services will continue.

Last week, a BHDDH spokesman said of Cunningham: “We greatly appreciate her work to improve employment options for adults with intellectual and/or developmental disabilities. She will be missed, and we wish her the best in her new position.”

Cunningham has served as Associate Director for Employment Services in the Division of Developmental Disabilities since July 2016, according to her LinkedIn page. The post was created in response to the demands of the consent decree.

Elissa O’Brien, chairwoman of the AccessPoint Board, said Cunningham has more than 30 years’ experience in the field of intellectual and developmental disabilities, as well as two masters’ degrees, one in rehabilitation counseling and the other in strategic management and innovation.

AccessPoint has “lots to be thankful for” as Cunningham takes the reins from Kane, O’Brien said. “Under his leadership, the organization has grown and now services close to 1,000 children and adults annually. We are forever grateful to Tom for his hard work and dedication to our organization and to individuals living with IDD,” she said.

With April 9 marking the start of the eighth year of consent decree implementation, BHDDH could not say who might succeed Cunningham or describe specific plans for supported employment services in the next fiscal year, just three months away. A spokesman said only that “BHDDH will work with the stakeholder community to determine what that future programming will look like.”

DOJ Seeks Fines Up To $50K Daily For Rhode Island’s DD Consent Decree Noncompliance

By Gina Macris

The US. Department of Justice has proposed fines up to $1.5 million a month against the state of Rhode Island for failing to comply with a civil rights consent decree protecting adults with developmental disabilities during the last seven years.

The proposed fines are part of a preliminary filing in connection with a contempt hearing scheduled for mid-October by Chief Judge John J. McConnell of the U.S. District Court.

“The United States has sought for several years to work with the State regarding its noncompliance, to no avail,” said the DOJ lawyers.

In a memorandum to McConnell, the DOJ said that the state has fallen far short of numerical targets for providing services for integrating adults with developmental disabilities in their communities, both for employment and non-work activities.

Nor has the state kept its promise to provide adequate funding to maintain the number of agencies and workers needed to provide these services, the DOJ said. Then-governor Lincoln Chafee signed the consent decree April 8, 2014.

If necessary, the DOJ said, it will present evidence in October that state “failed even to ask its Legislature for a sufficient appropriation” and that it “failed to make efficient use even of the resources it had – for example, by failing to modify State rules and incentives that favor providers of less integrated services over providers of more integrated services.”

Those “rules and incentives” allude to Project Sustainability, a ten-year old fee-for-service reimbursement model that still allocates 40 percent of a recipient’s service hours to segregated, center-based care.

The DOJ said the court should “impose a reasonable fine on the state to incentivize it to rapidly come back into compliance with the Consent Decree, and to compensate for the state’s current underfunding of services.”

The proposed schedule of fines:

• $500,000 on the first day of the month for the first two months after a judicial finding of contempt.

• $50,000 a day, or about $1.5 million a month, beginning on the 70th day after a contempt order. The money would be deposited in a special fund to be used for consent decree compliance. The state should be prohibited from paying the fines out of any funding that otherwise would benefit Rhode Islanders with disabilities, the DOJ said.

McConnell has cleared the week of Oct. 18 through Oct. 22 to hear evidence in the contempt proceedings. The consent decree draws its authority from the Integration Mandate of the Americans With Disabilities Act, as reinforced by the Olmstead decision of the U.S. Supreme Court.

To help remedy any contempt finding and lessen fines, the state could increase the number of supported employment placements and expand the service hours of integrated daytime activities in accordance with the consent decree, the DOJ said.

In a separate step, the DOJ asked McConnell to order the state to prepare a plan for funding and complying with the consent decree before its term ends June 30, 2024. Such a document could help remedy the contempt and, with the court’s approval, could be incorporated in the existing decree.

By its own account, the state has missed its employment targets by more than a third for people in two categories of the consent decree population. They are the “Youth Exit” group, adults who left high school between 2013 and 2016, and the “Sheltered Workshop” group, those who once worked for subminimum wages in sheltered workshops, which were eliminated in 2018.

The chart below, from the state’s report to the court for the quarter ending March 31, shows employment in relation to the latest consent decree targets for a 12-month period. While part of the slow growth during 2020 might be attributed to the COVID-19 pandemic, the state had been falling further behind in previous years.

In another category, only 55 percent of adults are participating in integrated non-work activities in the community for slightly less than ten hours a week, on average, and only a fraction have a combined schedule of employment and other activities in the community filling more than 20 hours a week, according to the latest report of an independent court monitor, cited by the DOJ. In the consent decree, the state agreed to fund services for a total of 40 hours a week.

The DOJ also cited the monitor’s assessment that the state lacks the workers and the funding necessary to provide the services to comply with the consent decree.

Consultants from Approach Group, a Boston-based firm, have calculated the worker shortage at more than a 1000 of the 2845 direct care staff it said are needed to support Rhode Islanders with developmental disabilities in the community.

Separately, Approach Group and three other consultancy firms participated in 18-month, $1.1 million analysis of the developmental disabilities system commissioned by the state that found fiscal instability in the private provider system, which the state relies on for compliance with the consent decree.

The organizer of the four firms, the New England States Consortium Systems Organization (NESCSO), submitted its final report July 1, 2020, to the state Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH), laying out various options for alternatives to the state’s fee-for-service reimbursement system.

But the state’s subsequent budget deliberations did not address the NESCSO report or the needs it identified.

Instead, it appeared that BHDDH and Governor Dan McKee’s initial budget proposal responded to a directive from the Office of Management and Budget for a 15 percent budget reduction across the board.

In the end, Judge McConnell ordered state officials and providers to negotiate a wage hike in an effort to attract more workers.

As a result, the General Assembly set aside $39.7 million in the current budget for raises of $2 to $3 an hour for front-line workers and their supervisors, effective July 1. McConnell also has ordered that entry-level wages climb to $20 by 2024 to make Rhode Island competitive with neighboring states in what is a nationwide shortage of caregivers.

While the state is facing the prospect of hefty fines beginning as soon as November, BHDDH is seeking further study of the needs of adults with developmental disabilities.

Despite NESCSO’s detailed analysis and presentation of options for systems change, BHDDH reported to the court in July that “efforts are underway to draft an RFP (request for proposals) for a Systems Rate Review.

“The focus of this Rate Review will be to take an in-depth look at how services are funded in the Adult DD System to determine if the funding is adequate; if the appropriate services are being funded; and to look at new services categories,” the state’s report to McConnell said.

To read the DOJ’s proposed contempt order, click here.

To read the DOJ’s motion for contempt, click here.

To read the DOJ’s arguments for contempt, click here.

For charts supporting the DOJ’s arguments, click here.

AccessPoint RI, CVS, Offering Challenged Rhode Islanders A Leg Up With Virtual Training, PPE

By Gina Macris

ACCESS Point Trainee, Pre-COVID, Practices Inventory Skills.

Rhode Islanders facing challenges in employment, because of developmental disabilities or other struggles, may begin preparing for work in the retail sector sector as soon as next Friday in an eight-week training program offered by AccessPoint RI in collaboration with CVS.

Organizers say the COVID-19 pandemic has slowed enrollment in the training program, which has been offered periodically since 2018 through the Pathways Partnership initiative sponsored by the state Department of Labor and Training.

But as a precaution, the sessions are now offered fully online, or in a hybrid format, according to spokesman Michael Beauregard. Participants learn and practice customer service and retail skills, as well as COVID-19 safety measures, and then gain real work experience, with PPE, (personal protective equipment) in a training site outfitted as a CVS store.

At the completion of the program, participants receive employment assistance to help them find the best match, retail, not exclusively in the CVS chain but at other retailers, like Home Depot, WalMart, Walgreens, and many smaller businesses. Before the pandemic, the employment rate for graduates of the training program was 71 percent, according to Beauregard.

Anyone interested in enrolling in the Feb. 12 class or in getting information about a future training cycle may contact the program coordinator, Jim O’Connor, at 401-200-1230 or email him at joconnor@accesspointri.org.

Olmstead Monitor: RI Needs Overhaul Of DD System To Comply With 2014 Agreement

By Gina Macris

During the next three years, Rhode Island must completely restructure its services for adults with intellectual and developmental disabilities and increase financial support accordingly to fully comply with a federal civil rights consent decree by the 2024 deadline.

A. Anthony Antosh

That is the conclusion of an independent federal court monitor, A. Anthony Antosh, in an Oct. 7 report to Chief Judge John J. McConnell, Jr. of the U.S. District Court.

At McConnell’s direction, Antosh says he’s also working on a dollar figure for the cost of compliance, using an outside $1.1 million analysis of existing services commissioned by the state itself.

The state agreed, under the consent decree in 2014, to end its reliance on sheltered workshops and group day care centers and instead put adults with developmental disabilities in the driver’s seat when choosing a path in life, with an emphasis on regular employment and participation in community activities.

The last sheltered workshop closed in 2018, but many of the other goals of the consent decree have remained elusive, and Judge McConnell has grown impatient with a lack of funding he says is necessary to lay the foundation for compliance by the time federal oversight is scheduled to expire in 2024.

John J. McConnell, Jr.

“If anybody couldn’t tell, I am obsessed with the issue of funding as essential for us to get there,” McConnell said during a virtual hearing in July.

“If we don’t come up with a way to systemically support the (service) providers, then the whole thing will be meaningless,” McConnell said.

He has said he is prepared to tell the state to “find the money” to comply with the consent decree. State officials who control the purse strings must participate in the redesign of services, the judge has said.

In the most recent monitor’s report, Antosh set the tone for his recommendations by saying that compliance is “not found in a narrow analysis of the benchmarks of the Consent Decree, but is rooted in defining the structural changes that need to occur in order that the goals of the Consent Decree can be achieved.”

In bold print, he highlighted the fact that the outside analysis of the existing system found that most of the private service providers are “fragile and profoundly undercapitalized.”

In a separate report, the state responded to a court order that it address 16 fiscal and administrative barriers to the integration of people with developmental disabilities into their communities as mandated by the consent decree. The summary is the first of six progress reports the state must make to Judge McConnell by next June on its planning effort for long-range reform.

In its report, the state set a deadline of March, 2022 to overhaul its fiscal system. The changes include the elimination of three practices that for years have been identified as problematic by families and providers:

• staffing ratios that discourage community integration, so that in some cases, one worker must supervise up to five people on an outing, whether or not those people want to be there.

• documentation of staff time in 15-minute increments, which providers say diverts significant resources that otherwise could be used for direct services.

• Allocation of a certain percentage of services for segregated facility-based activities.

Alluding to the budget uncertainties caused by the ongoing Covid-19 pandemic, the state’s seven-page summary cautions that the planning efforts are “dependent upon the continuation of current state staffing and budgetary levels.”

Monitor’s Budget For Reform Coming “Soon”

McConnell has asked Antosh to analyze current funding and make a dollars-and-cents recommendation for the cost of implementing the needed comprehensive changes.

Antosh said that report will be completed “soon.” He said he has begun that work, relying primarily on data drawn from an 18-month study done by the New England States Consortium Systems Organization (NESCSO) for the state’s disability agency.

The 143-page NESCSO study presented a number of findings and options for change but made no recommendations, at the behest of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Antosh said there is a need for systemic restructuring of existing services and supports, which are now “essentially based on group activities that occur in a blend of facility and community settings.”

The situation is exacerbated by a difficulty in recruiting and retaining high quality staff and by the COVID-19 pandemic, which in emphasizing the health risks of large gatherings has “reinforced the diminishing value of facility-based group services,” Antosh said.

The pandemic also has led to a setback in the progress made in the area of employment for adults with developmental disabilities. In June, as the state was beginning to reopen, only 31 percent of those who previously held jobs were still actively employed, Antosh said. (Some on furlough have since returned to work.)

Among work crews hired for large scale commercial cleaning or laundry operations and the like, only about half were working, he said.

The statistics underline a need for “new and intensified approaches to job development,” he said. “What is needed is a new model for providing supports that is more individualized, community based, and uses funds and supports from an increased variety of sources,” including the state’s Department of Labor and Training, Antosh said.

Family Hesitation About Integration

While the gears of state government are focused on moving Rhode Island into compliance with the federal government’s mandate of integrating individuals with developmental disabilities into the larger community, more than a third of the families with an adult son or daughter who would benefit say they oppose or are not yet convinced that the push toward employment is worthwhile.

The pandemic aside, significant numbers of families also express opposition or hesitation about their loved ones’ increased participation in community activities.

For Antosh, who included survey results of families as part of his report, the statistics underscore the need for adolescents to experience work-related and social activities in their communities as part of their education and for families to receive more information about the breadth of available opportunities.

It is perhaps most telling that among families of high school students, who are more likely than their older peers to have had internships and community experiences as part of their education, only 3 percent were opposed to jobs for their sons and daughters and 10 percent said they weren’t sure. Two thirds of families of adolescents said they believed the young people should have jobs as adults. Other parents of high school students – about one in five- said their son or daughter had to deal with other challenges before turning to employment. This is typically the case for those with chronic health problems.

Source: Monitor’s Report To U.S. District Court 10-7-20

The 2014 statewide consent decree draws its authority from the Integration Mandate of the Americans With Disabilities Act, which was reinforced by the Olmstead decision of the U.S. Supreme Court. The high court said that states must deliver services to all persons with disabilities in the most integrated setting that is therapeutically appropriate, and it presumed that setting to be the community.

In 2014, the U.S. Department of Justice found that the state violated the Integration Mandate by funneling high school students from segregated educational programs with low expectations to a lifetime of isolation in sheltered workshops and day care programs. In signing the consent decree, the state agreed to correct the violations by 2024. (A preliminary case against the state and the city of Providence in 2013 was merged into the statewide consent decree a year ago after Judge McConnell found the city and its school department had turned around a segregated high school program for students with developmental disabilities, leaving only the state as the defendant.

Antosh outlined several overarching features of successful implementation of the consent decree, including these:

• Each person will have the supports necessary to enjoy a self-determined, self-directed life based on work and non-work activities in the community.

• Private provider agencies will have the funding, staffing and other resources they need to meet the support needs of all persons receiving funding through the Division of Developmental Disabilities.

• Every adolescent and adult with intellectual or developmental disabilities will have the information and guidance they need to navigate a simpler and more efficient system of services.

• All adolescents and young adults leaving school will have had enough transitional work-related and non-work experiences in the community to make informed choices about jobs and careers, as well as a plan to direct their own programs or sign on with a provider organization.

Antosh recommended that the state develop a three-year budget strategy, beginning July 1, 2021, to “stabilize” developmental disability services and provide sufficient funding to implement the consent decree.

The monitor’s recommendations include a new, formal role for the Department of Labor and Training (DLT), which until now has not been a part of the multi-agency state team responsible for official responses to the court.

Antosh said DLT should immediately join BHDDH, the state Department of Education, the Department of Human Services, and the Executive Office of Health and Human Services in working on consent decree compliance.

DLT also should include all teenagers and adults with developmental disabilities in the workforce initiatives it administers, the monitor said.

By Jan. 1, 2021, the state should create an “Employer Task Force” to promote employment of those with developmental disabilities, Antosh said. The task force would identify relevant workforce trends and advise state officials and provider organizations about ways to reach out to prospective employers and offer employers incentives and support.

By April 1, 2021, the state must identify every possible source of funding that could support the consent decree and describe ways these sources can be “braided” to support the various requirements of the agreement.

As for private providers, the backbone of the service system, Antosh set a deadline of April 30, 2021 for them to develop action plans for the future. There are 36 provider agencies, most of them offering both day and residential services. In their plans, providers should redefine the support area that will be their focus, address consent decree issues, make budget projections and include internal quality improvement programs.

Just as the state has established five workgroups to address fiscal and administrative problems, Antosh recommended the state create additional issue-oriented work groups whose members are drawn from the ranks of state officials and community organizations, like the Employment Force Task Force.

One group would develop strategies to stabilize the workforce by increasing salaries, elevating professionalism through training, and creating a career ladder.

Other groups would address specific plans for:

• putting individuals at the center of mapping out long range and short-term goals for their future and strategies for achieving them

• ensuring young people have a smooth transition from high school to adult services,

• creating new models for providing services and supports for employment and community-based activities.

• enhancing the use of technology as a support strategy

• Developing alternative transportation options, including stipends that allow individuals to arrange their own rides

• Improving outreach to families, including those speak languages other than English and come from diverse cultures.

To read the full monitor’s report, click here. To read the state’s report, click here.

Photos by Anne Peters

RI: Life And Death In Split-Screen Reality

Cassiana Fuller at work

By Gina Macris

The statistics are grim: five deaths since April 1 attributed to COVID-19 in connection with group homes in Rhode Island, including four residents with developmental disabilities and one caregiver.

But stories from the developmental disability community are not all about vulnerability.

Some people with intellectual challenges and other developmental disabilities are nevertheless working on the front lines to help get food on people’s tables and keep congregate care facilities clean. Nikolas Simijis, for example, has made a conscious decision to work as a personal grocery shopper in Providence, despite the risks.

Cassiana Fuller recently took on a job in the housekeeping department at the Cherry Hill Manor And Rehabilitation Center in Johnston, undergoing special training in cleaning high-contact surfaces last month just as the coronavis started to hit Rhode Island. And a third worker, identified only as Michael, hasn’t missed a day on the job at Shaw’s supermarket in East Providence since he was hired last August.

Like the rest of the country, Rhode Island is living a split-screen reality, literally and figuratively. At the same time that Governor Gina Raimondo was giving one of her daily briefings this past week on illness, hospitalization, and death from a largely empty reception room at the State House, Nikolas Simijis, Cassiana Fuller, and Michael stood by at their separate workplaces, preparing for their own press conference on Zoom, the teleconferencing app.

The virtual event was sponsored by the Rhode Island chapter of the Association of People Supporting Employment First (RIAPSE) and the Rhode Island Developmental Disabilities Council “to show how people are affected by policies and legislation,” said Kevin Nerney, executive director of the Council.

The federal-state Medicaid program, which pays for employment-related supports that make it possible for Nikolas, Cassiana, and Michael to work, is “so much more” than medical funding, Nerney said.

“It allows people to live independent and meaningful lives and to be full citizens in their community,” Nerney said. (Medicaid also has waived some of its rules to give states greater flexibility in responding to the pandemic.)

The annual event, called “Take Your Legislator To Work Day,” drew U.S. Rep. David Cicilline, representatives of the other three members of Rhode Island’s Congressional delegation, who had to bow out to attend pandemic-related events, and several members of the Rhode Island General Assembly.

Adrienne Tipple of the Perspectives Corporation, who helps Nikolas at Whole Foods on Waterman Street in Providence, said the two of them had serious conversations about “what’s going on in the world, and he made an informed decision to be out here.”

NikolAS sIMIJIS wORKS aT wHOLE fOODS

Whole Foods provides a mask and gloves for Nikolas, who has his temperature taken every day when he gets to work, Tipple said. She is Manager of Youth Transitional Employment Services at Perspectives.

Nikolas uses an iPhone loaded with the software he needs to navigate the store to shop items on customers’ lists, bag them, and hand them off to a driver for delivery.

“Some people can’t come to the store. It would be a risk for them,” Cicilline said. “The work you are doing will help save people’s lives. Thank you for doing it,” he said.

Other legislators – State Reps. Joseph N. McNamara, D- Warwick; Terri Cortvriend, D-Portsmouth; and Katherine S. Kazarian, D-East Providence, as well as State Sen. Louis Di-Palma, D-Middletown, underscored that message.

At the Cherry Hill Nursing Home and Rehabilitation Center in Johnston, Cassiana’s supervisor, Kevin Carrier, praised her diligence and attention to detail, particularly the cleaning of high-contact surfaces like doorknobs and elevator buttons.

Cassiana, Nikolas and Michael all are young and healthy and live with their families. They don’t have any underlying medical conditions which might make other people with developmental disabilities more vulnerable to the virus, especially in congregate care settings.

With the peak in coronavirus cases still a week to ten days away in Rhode Island, according to the experts’ projections, the impact has started to hit the developmental disabilities community.

As of April 18, there have been 35 cases of COVID-19 in group homes for adults with developmental disabilities, while an additional 6 residents of group homes for behavioral health have tested positive. Seventeen group home residents have been hospitalized, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Two of the four deaths of group home residents occurred at different properties run by AccessPoint RI. BHDDH has been working with AccessPoint “throughout the crisis” to contain the virus, identifying relief staff, supplying AccessPoint’s emergency facility with beds and supplies and moving some residents to an alternate BHDDH group home, the spokesman said.

A total of 1180 people with developmental disabilities live in congregate care, but that is less than a third of the population receiving some type of service from BHDDH. The department is asking everone with developmental disabilities and their family members to check in if anyone in the household has tested positive. Details on the check-in, as well as information on other types of outreach, are in the department’s weekly developmental disability newsletter, which can be found by clicking here. The newsletter includes a correction from last week’s installment, saying that those who independently direct services for a loved one may hire a family member as a caregiver.

A widespread shortage of masks, gloves and other equipment in hospitals, nursing homes and other congregate care settings has been one of the issues Governor Raimondo has addressed repeatedly in her daily briefings as Rhode Island competes with other states and with the federal government to get the equipment it needs.

Unionized workers at the ARC of Blackstone Valley protested against a lack of protective equipment and inadequate pay with a caravan of cars outside the ARC of Blackstone Valley at, 500 Prospect St. in Pawtucket April 15.

The rate increase authorized by the state to private providers of developmental disability services pays for a $1 an hour raise, but providers, who have been hit hard financially by the pandemic, are nevertheless offering increases of $2 to $5 an hour for those working in group homes, according to Tina Spears, executive director of the Community Provider Network of Rhode Island.

Antosh Resolves Dispute Between RI and DOJ On Compliance With 2013 Sheltered Workshop Case

By Gina Macris

Federal court monitor A. Anthony Antosh has forged a resolution to a long-simmering dispute between the U.S. Department of Justice and the state of Rhode Island over the state’s compliance in connection with two civil rights decrees aimed at finding jobs for adults with developmental disabilities and otherwise integrating them in their communities.

The Chief Judge of the U.S. District Court in Rhode Island announced that both the state and the DOJ have agreed to a detailed compliance road map crafted by Antosh in an order made public March 3.

In a separate order Feb. 28, the Chief Judge, John J. McConnell, Jr., announced he has elevated Antosh from interim to permanent status as monitor.

The judge’s March 3 order incorporated recommendations Antosh had previously submitted detailing the parameters for the state’s “substantial compliance” with a 2013 Interim Settlement Agreement (ISA), a total of 88 adults with developmental disabilities.

Antosh focused on 32 individuals who are either unemployed or working in non-competitive employment for a private developmental disability service provider. He enumerated a variety of services and supports which must be provided to these particular people, including new trial work experiences, more non-work activities in the community and a variety of specialized help to break down barriers like mobility issues, vision problems and behavioral challenges which hinder some people from getting around and looking for work.

Antosh extended the monitoring period from the ISA from July to December. To achieve compliance with the ISA, the state must show that 80 percent of the people in Antosh’s case studies are spending more time in the community, either for work or leisure. The ISA was originally scheduled to end July 1.

Antosh also said the existing funding does not go far enough, nor does it have the flexibility to meet the individual needs and preferences of persons protected by ISA, and by implication, a broader 2014 consent decree with a statewide reach.

The ISA and the statewide decree of 2014 both draw their authority from the Integration Mandate of the Americans With Disabilities Act, reinforced by the Olmstead decision of the U.S. Supreme Court.

In addition to requiring funding for specific services, consultations and technology on a person-by-person level, Antosh called for a re-calculation of the state’s existing funding mechanism for reimbursing private providers working with adults facing intellectual challenges.

While such a review is well underway and is expected to wrap up in June, it appears that the earliest the General Assembly would be able to enact any significant changes to the existing funding model would be in 2021, when the statewide consent decree will be in the seventh year of a ten-year enforcement period.

Most, if not all, of the 88 persons protected by the ISA are former students of the Birch Academy at Mount Pleasant High School in Providence. Many of them were funneled from Birch to a now-defunct sheltered workshop called Training Through Placement in nearby North Providence.

In introducing his study of the unemployed ISA population, Antosh noted that most of the people he interviewed could not answer his questions about their interests, the jobs held by relatives or friends, or if there was any kind of work they would like to try.

The answers provided evidence that these individuals had had limited life experiences, “one of the most common characteristics associated with individuals who have an intellectual disability,” Antosh said.

He said that “people do not choose what they do not know about,” which means that the individualized, or “person-centered” process of planning for job searches and other activities is not meaningful unless the person has had a “sufficient number of experiences of sufficient duration.”

This rationale underscored a requirement that each of the currently-unemployed persons have one or two trial work experiences, depending on whether they had previously had any community-based jobs, and that the state find the money to add the supports for these activities.

Since last July, the state had maintained that, because it has policies, practices and resources in place to satisfy the requirements of the 2013 ISA, it had met the compliance standards of the agreement, even if some of the 88 individuals in the protected class didn’t actually have jobs in the community as required.

But Antosh disagreed. He said that because the ISA population is “so small and so focused, the question of substantial compliance is about whether each and every individual has received supported employment services” and other necessary assistance.

Antosh said his study could not find any evidence the state is complying with one overarching requirement in the ISA, that it provide services for a total of 40 hours a week, including work and non-work activities in the community. The same requirement carries through to the statewide consent decree of 2014.

The state had said, in effect, that its best efforts to find jobs for the ISA population satisfied the requirements of the interim agreement, even though 15 former Birch students had never been employed outside of a sheltered workshop. The state has pledged to continue working with these persons.

But Antosh analyzed the barriers to employment listed by the state in these cases and made recommendation for ways the state can mitigate them:

For example, the state should provide:

• Up-to-date communications technology for people who have difficulty expressing themselves verbally

• Consultations with physical or occupational therapists for people who could benefit from better wheelchairs or other strategies for positioning their bodies.

• Access to tablets and other technology for those who want to do job searches or just stay in touch with the activities occurring in their communities.

• Assistance to service providers to develop strategies for reinforcing positive behavior for those who struggle with behavioral challenges. He said he found no evidence that these strategies were being used with the people who need them.

• Opportunities for conversations between families of persons with developmental disabilities who have had experience with supported employment and those who are resistant to the idea. Antosh said those who are resistant have expressed a willingness to listen to other families.

As for the state’s role in job searches, Antosh prescribed an approach similar to the “Real Jobs” strategies used by the state Department of Labor and Training, which starts with a survey of the needs in the business community and then tries to match individual interests and aptitudes with those openings, offering training to prepare potential job applicants.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has indicated it is close to announcing the third iteration of a targeted supported employment program that will focus on some 200 adults with developmental disabilities who have never had regular jobs. It is not clear whether the plans for the newest version of the so-called Person-Centered Supported Employment Performance Program will correspond to Antosh’s approach, which is now required by the Court.

Antosh plans to track increases in jobs and community activities during reviews in May and November to determine if the required services are in place for each person and whether there is a positive change in their engagement with the community.

Assuming that the state achieves compliance in December, there would be another year’s probation, through the end of 2021.

Antosh does not expect everyone who is either unemployed or not competitively employed to have a job in short order. In his report, he estimated that 9 of the 32 people on his list can be employed in a year’s time and that another two can find jobs within two years.

Judge Calls For Plan To Overcome Barriers In Implementing RI Olmstead Consent Decree

By Gina Macris

The Chief Judge of the U.S. District Court in Rhode Island has ordered an independent monitor to bring him a new plan for implementing a 2014 civil rights agreement that seeks to integrate people with developmental disabilities in work and leisure activities in their communities by 2024.

With the state falling short of its job-placement goals in two of three categories in 2019, as well as other developments in recent months, indicators are mounting that the current approach isn’t working.

In an order issued Feb. 3, Judge John J. McConnell, Jr. has charged the interim court monitor with gathering a wide range of data and information from multiple sources, including comments from people with developmental disabilities, their families and representatives of the community, as a baseline for discussions on the way forward.

McConnell gave the monitor, A. Anthony Antosh, until April 30 to complete the information-gathering process and until August 30 to complete the plan, in collaboration with the U.S. Department of Justice, state officials and community representatives who serve on the Employment First Task Force, a committee created by the consent decree as an advisory group to government.

The judge went so far as to specify what agencies and officials Antosh should seek out, including “any interested legislators re: consent decree policies and funding.”

The process appears poised to capture the recent recommendations of a special legislative commission on the state’s fee-for-service funding system, as well as an ongoing rate review being conducted by outside consultants at the behest of the state Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals.

McConnell said he wants Antosh to identify:

• Policies, activities and funding needed to achieve substantial compliance by 2024

• Obstacles and barriers to full implementation

• Service gaps that might hinder full implementation

• Structural components for a compliance plan

• Criteria for substantial compliance

The standards for compliance have become a matter of debate between lawyers for the DOJ and the state in the context of a prototype for the 2014 consent decree, the so-called Interim Settlement Agreement (ISA) of 2013, which affects about 88 former sheltered workshop employees who once attended the Birch Academy at Mount Pleasant High School and later worked at the now-defunct Training Through Placement.

The city of Providence was released from federal oversight in connection with the ISA last September in unusually celebratory courtroom proceedings, with accolades from all sides on the way it has changed the culture at the Birch Academy and turned around the lives of students.

But the performance of the state on implementing the ISA has not received such rosy reviews, an indication it is struggling with the consent decree as well.

In the ISA, the city and its school department have been responsible for opening the doors to integration through inclusive classes and internship programs, while the state has been charged with picking up where the educational system leaves off, to match individuals with jobs and help them participate in activities of their choice in the community. The state’s role in the ISA mirrors its relationship to school departments throughout Rhode Island in the consent decree, except on a broader scale.

Statewide, the number of adults with developmental disabilities who s must be offered employment by 2024 currently totals 1,987, according to the state’s latest consent decree data. That number is a little more than half the population protected by the consent decree.

After five years and nine months of the decade-long enforcement period of the consent decree, a total of 894 people, or 45 percent of the target number, have landed jobs, the state said in a report that captures progress through December 31, 2019.

The state exceeded the cumulative goal for employment in 2019 by more than 100, but missed targets in two subgroups, named “youth exit” and “sheltered workshop,” labels chosen to reflect whether individuals were young adults who had recently left school or working in enclaves at the time the consent decree was signed.

The state has never met the job targets for the “youth exit” group, which also represents the segment of the population that is applying for adult services for the first time, often from agencies that are hard-pressed to meet the needs of existing clients, let alone take on new ones.

In a third group labeled “day program” to describe those in day care centers in 2014, the number of new jobs recorded through 2019 rose to 385, or 160 over the goal, enough to overcome the shortfall in the other two categories.

But the the pace of new jobs has slowed. There were only 14 new job placements statewide for the last quarter of 2019 and 74 for the entire year. The remainder of the new jobs were recorded in previous years.

State of RI graphic representation of cumulative employment totals by quarter in 2019 under terms of Consent Decree

State of RI table of cumulative employment totals, by quarter, in 2018 and 2019 under terms of Consent Decree

One group not counted in the target population for employment is “youth in transition,” a total of 1,201 high school students with developmental disabilities, or 32 percent of the entire class protected by the consent decree. Many of them are expected to enter the labor market in the next several years.

Last fall, within the limited scope of the ISA, Antosh’ predecessor as court monitor, Charles Moseley, found that the state has made considerable progress in improving the lives of former Birch students – but not enough to warrant the end of federal oversight.

McConnell asked Antosh to review materials developed by Moseley, which include a 70-page exhaustive assessment of the state’s performance in meeting dozens of specific standards in the ISA.

In a draft report, obtained by Developmental Disability News, Moseley said the state has made considerable progress in changing the lives of the nearly 90 people still protected by the ISA, – but not enough. He completed the report at the end of September.

Moseley said the state fell short in several key areas:

• The number of people it had connected with jobs

• The number of hours logged by the job holders, some of whom said they wanted to work more

• The degree to which non-work activities in the community promoted interactions with non-disabled people

• The specificity and sense of purpose in the written short-range and long-term goals and supports that are supposed to fit together in a cohesive career development plan tailored to the individual

In a notice to Judge McConnell submitted in late December, the DOJ said that while the state “made initial progress in implementing the Agreement’s provisions, recent monitoring has showed that the state’s efforts have stalled such that it may not independently act to achieve the requisite outcomes before the Agreement ends.”

In its reply, the state acknowledged that it had not found jobs for 15 members of the protected class but said the barriers included health and behavioral problems, family resistance, and other issues.

The agreement itself says that “substantial compliance is achieved where the State and City have implemented all of the provisions of the Interim Settlement Agreement for all individuals in the Target Populations.”

In the context of that language, the state lawyers maintained that implementation means it has “mechanisms and/or policies” in place to carry out any of the specific requirements of the agreement, whether or not a particular numerical target is reached, as long as the “Court is satisfied that the State is on track to reasonably reach the requirement.”

Those who don’t want jobs can file for an exception, or variance, with the monitor, but Moseley said he had not received any such requests from the 87 members of the protected class. The state’s lawyers said officials wanted to keep working with the 15 unemployed persons rather than have them opt out of the search for employment.

Moseley’s report goes into great detail in evaluating the state’s performance on dozens of standards, many of them bureaucratic, that are nevertheless important for creating a high quality system of social services designed to sustain itself after the consent decree is long gone.

Among other things, the standards cover multiple aspects of:

• quality improvement

• detailed data collection

• benefits counseling for job seekers so that they know how earned income will affect their government disability payments, if at all

• the clear communication of each person’s short-term and long-term objectives in detailed career development plans

• staff training

In several areas, Moseley said he did not find enough documentation or evidence to make an assessment, although the state says it has supporting materials to show it has met the standards in question.

For example, Moseley said he didn’t have enough information to determine whether the state is following proven, or “evidence-based”, practices in its approach to employment supports for adults with developmental disabilities.

He also said the state hadn’t given him enough documentation to show whether the private agencies delivering services have the wherewithal, or capacity, to serve adults with developmental disabilities as required by the ISA.

Both Moseley and Antosh are experts in the research on supporting adults with developmental disabilities.

Antosh wrote the proposal that established the federally-funded Sherlock Center on Disabilities at Rhode Island College and served as its director from its inception in in 1993 until October, 2019.

Moseley, a former director of Vermont’s developmental disability system, worked as a top official in the national association of state developmental disability directors before he became the court monitor. Moseley stepped down for health reasons at the end of September.

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 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.

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

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

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

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

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

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

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

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

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.