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.

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.

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.”

RI Dodges Contempt With DD Action Plan

By Gina Macris

The Chief Judge of the U.S. District Court welcomed Rhode Island’s action plan to turn around the lives of adults with developmental disabilities, saying in a hearing Oct. 20 that the state has taken “historic and comprehensive” measures to set it on a path to comply with a 2014 civil rights consent decree.

Judge John J. McConnell, Jr. (left) approved the plan, which commits at $50 million in the next few years to stabilize and expand a skilled workforce and promises a structural overhaul of the way services are delivered and providers are paid, according to summaries provided by a lawyer for the state and an independent court monitor.

“This a major step in improving the lives” of adults with developmental disabilities, McConnell said in the hearing, which was streamed remotely via the Internet.

McConnell said that in his 30 years as a lawyer and ten years on the bench, he’s “never seen the state move as quickly, effectively and positively.”

“Make no mistake about it. Moving that mountain was a mammoth undertaking,” McConnell said.

“You have my thanks,” he said, singling out State Sen. Louis DiPalma, D-Middletown, and Kevin Savage, Director of the Division of Developmental Disabilities, for their roles in negotiating the action plan.

Without the action plan, the state could have faced fines of up to $1.5 million a month for contempt of court for continued violations of the consent decree.

The ultimate goal is the systemic restructuring of the system so that those with intellectual and developmental disabilities can live the lives they want in their communities, consistent with the Olmstead decision of the U.S. Supreme Court, McConnell said. The Olmstead decision re-affirmed the Integration Mandate of the Americans With Disabilities Act.

Making a real difference in the lives of those protected by the consent decree “will be another heavy lift,” the judge said. “That’s a long-winded way of saying, good job; there’s a lot of work ahead of you.”

Both the monitor, A. Anthony Antosh, and a lawyer for the U.S. Department of Justice (DOJ), said they will be watching very closely to measure the real-life impact of the action plan on life circumstances of individual service recipients.

Victoria Thomas, the DOJ lawyer, said she and her colleagues in the civil rights division are “cautiously optimistic” that the action plan will achieve the goals of the consent decree by the time it is set to expire in 2024.

“Recent comments indicate that there are many people in Rhode Island that are not getting what they need, want, or are entitled to get” under the law, Thomas said.

Those eligible for services say “they want to be working,” Thomas said.

Families who “rely on day services to function” are essentially trapped,” she said. “They can’t go to work and in some cases can’t leave their homes.”

To focus on the state’s progress, the DOJ and the monitor will review data every 90 days to determine what services eligible persons receive and their duration, Thomas said.

“Rhode Island businesses are eager to hire, and people with developmental disabilities are eager to work,” she said. “The action plan has multiple strategies to do that,” both on a short-term and long-term basis, Thomas said.

Antosh, the court monitor, said the action plan responds to a years-long drive to stabilize and expand the private provider workforce which the state relies on to bring it into compliance with the consent decree, and more recently, a series of court orders spelling out what that effort should look like.

The one that sent ripples through the State House said the state wages must hit $20 an hour by 2024. The action plan says the state will deliver on that pay hike, along with an interim raise, from $15.75 to $18 an hour effective July 1, 2022.

McConnell said “the court’s role is not to tell state what it should do or to run the agency,” a reference with the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

“The court’s role is to ensure compliance with the consent decree. The state, after many years, agreed it has systemically violated the rights of people with developmental disabilities All parties agreed the consent decree would be the vehicle to ensure (those) rights,” McConnell said.

Antosh, meanwhile, said the significant investment in funding higher wages will be accompanied by a shift in strategy for recruiting and retaining new staff to offset the fact that the traditional population interested in caregiving jobs is shrinking.

He said there will be a public-private partnership led by the Department of Labor and Training, the Community College of Rhode Island and other workforce and educational organizations. Together, they will re-define the roles of caregivers and creating targeted training programs, professional credentialling, and career ladders.

“A major strategy is to help people to achieve individual career goals,” Antosh said.

He explained other highlights of the action plan including an upcoming rate review, which he described as “the instrument” for changes that hopefully will create a better-functioning system.

Five consulting firms have bid for the job, and the state has committed to awarding the contract by November 1, with the work to be completed in a year’s time. It will include a reimbursement rate schedule that is indexed to the cost of living, Antosh said.

He said he will push to have a finished report sooner than that. The rate review, or portions of it, should be reflected in the next three budgets, he said.

In another change intended to stabilize financing, the state for the first time will include the developmental disabilities caseload in the semi-annual Caseload Estimating Conference, giving policy makers a realistic projection of developmental disability costs as a basis for budget preparations. The first such Caseload Estimating Conference will be later this month.

There will also be changes that will help increase individuals’ access to services by decreasing administrative burdens on providers. For example, the state plans to eliminate a requirement that staffers document their time individually in 15-minute increments for each person in their care, he said.

Another requirement on its way out is linking reimbursement to pre-determined staffing ratios based on each client’s general level of independence, or lack of it. These staffing ratios do not individualize needs, except for those with the most extreme disabilities, and do not take into account the amount of support necessary to carry out a particular task. Antosh said the complicated billing system will be replaced by two different rates.

The state has said the work on the administrative changes will be done by March 31.

Other innovations in the works will aim at increasing funding for transportation enabling the Rhode Island Public Transit Authority to become a Medicaid provider and by setting aside $2 million for the acquisition of technology for people with intellectual and developmental disabilities, Antosh said.

There are already specialized 400 apps available which aim at improving the quality of life for people with varying intellectual and developmental challenges, he said.

Kate Sherlock, the lawyer representing Antosh in recent negotiations, said the will to “get there” by restructuring the system “has been there all along, among consumers, their families, providers, and state officials, but change has been held back by a lack of funding.”

The action plan is a “significant step in the right direction,” she said. “We’ll be watching carefully to see what happens.”

To read the state’s action plan, click here.

To read the monitor’s memorandum on the action plan, click here.

BHDDH Seeks $18 Hourly Pay For RI DD Workers; $119M In DD ARPA Funding

By Gina Macris

Rhode Island’s developmental disabilities agency seeks to raise the pay of direct care workers to $18 an hour beginning July 1, 2022, a 14 percent hike over the current hourly rate of $15.75.

The raise would be covered by a $44.5 million increase in federal-state Medicaid funding for the privately operated developmental disability service system, according to a budget request submitted to Governor Dan McKee for Fiscal Year 2023 by the state Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH).

Within an overall agency budget of $585.9 million, representing a 12 percent increase, the Division of Developmental Disabilities would get nearly $380 million. That sum would cover both the privately-operated system of services and a state-run network of group homes. Private providers would get a total of about $352 million in federal-state Medicaid funding, about $44.5 million more than the current budget of $307.9 million. The budget for the state-run group homes would remain relatively flat, at about $28 million.

In an Oct. 1 budget letter to the governor, BHDDH Director Richard Charest wrote, “The Division of Developmental Disabilities (DDD) continues its commitment in complying with the terms of the 2014 federal consent decree and providing integrated employment and day services.”

On Oct. 1, BHDDH was facing the prospect of a contempt hearing in U.S. District Court that was to start today, Oct. 18, over continued failure to comply with the 2014 civil rights agreement. But at the same time, the department was negotiating with an independent court monitor to reach a settlement that would avoid hefty fines proposed by the U.S. Department of Justice. On Oct. 13, five days before the hearing was to start,Chief Judge John J. McConnell, Jr. canceled it without explanation. Any settlement has yet to be announced.

The pace of job placements required by the consent decree has slowed, from 78 percent of the target number spelled out in the agreement for January 1, 2019 to 67 percent of the target for January 1, 2021. A lack of services in general, and employment-related support in particular, has been attributed to an acute shortage of direct care workers.

For years, all sectors of the human services have been affected by a workforce shortage, which has been exacerbated by the COVID-19 pandemic. But only programs serving people with developmental disabilities operate with federal oversight in Rhode Island. Chief Judge John J. McConnell Jr. of the U.S. District Court has ordered Rhode Island to raise direct care worker wages to $20 an hour by 2024 to attract new staff.

In its budget request, BHDDH is also asking for a one-time investment of $119.3 million in federal coronavirus relief funds from the American Rescue Plan Act (ARPA) for the developmental disabilities system. That figure represents more than 10 percent of of the $1.13 billion in ARPA funding available to Rhode Island, the only state in New England which has not yet spent any of its allocation.

The $119.3 million total includes capital expenses of nearly $74.5 million for repair and construction of residential and therapeutic facilities and about $44.9 for operational and program changes over the next few years. All the money would be spent by the end of 2025. The proposal acknowledges chronic underfunding of the developmental disabilities system.

The investments are intended to shore up existing services and facilities to achieve a “more holistic, individualized, and community-based system of supports” to comply not only with the consent decree but with the separate Medicaid Home and Community Based Services (HCBS) Final Rule, which requires integration for all Medicaid and Medicare-funded services, including residential programs.

Both the consent decree and the HCBS Final Rule draw their authority from the Olmstead decision of the U.S. Supreme Court, which has ruled that people with disabilities have the right to receive services in the least restrictive environment that is therapeutically appropriate.

The portion of the ARPA request aimed at programmatic and operational changes assumes that there will be a shift from the current fee-for-service reimbursement method for private providers to a “value-based” reimbursement model, although that change has yet to be defined. BHDDH is expected to award a contract in the next two weeks for a consultant’s study to examine rates and methods of reimbursement. The successful bidder would have six months to complete the work.

Within the $44.9 million ARPA request for operations and programs, BHDDH is seeking:

• $25 million for supported employment services, including efforts to bring more services to “BIPOC communities,” a reference to Black and Indigenous peoples and other people of color.

• $17,350,000 to help private providers arrange more integrated housing options, staff training, assistance in tracking the providers’ own performance according to certain measures, and technologies for shifting from fee-for-service to “alternative based payment models.” This segment of the request assumes each of 34 service providers in Rhode Island will get $500,000. It also would pay for a contractor to manage the program.

• $1,150,000 for a community-based mental health intervention response team for people who have both intellectual or developmental disabilities and behavioral issues that put them at risk of hospitalization. Plans for the model program, called START (Systemic, Therapeutic, Assessment, Resource, Treatment) have already been developed. It has been identified as a best practice by the National Academy of Sciences Institute of Medicine.

• $1 million for information and education for service recipients for and their families to ensure better access to services, particularly for people of color, who have been underrepresented in the service caseload.

The $75 million in capital investments would include:

• $60,350,000 in repairs to state-owned provider facilities. Deferred maintenance in group homes “is a drain on state and provider resources (and) a barrier to individuals aging in place,” the proposal said. The condition of some facilities is “not conducive to making individuals feel safe and valued in their homes and part of the larger community,” it said.

• $8,130,000 to build facilities to house 30 young people with developmental disabilities who are making a transition to the adult service system. Currently, these youngsters, particularly those who also have emotional or behavioral issues, languish in facilities for children or in hospitals, creating a backlog in the youth system.

• $6 million for a 24-hour community residential program for people with developmental disabilities being discharged from a hospital or other institution who still need more specialized care than is offered by a regular group home. Such a program would ensure that services are provided in the least restrictive setting as required by HCBS, the proposal said.

Taken together, “these investments will lay the foundation for a DD system that focuses on supporting participants in a way that promotes community integration and development of personal networks and circles of supports,” the proposal said.

It will require a “major shift in thinking and business models” to move from “caretaking” and programs developed by providers to “a focus on what individualized supports people need to be as independent as possible.”

To read the entire BHDDH ARPA proposal for developmental disabilities, click here.

Federal Judge Asks RI For Quick Action To Increase DD Funding And Avoid Court Order

John J. McConnell , Jr.

By Gina Macris

Chief Judge John J. McConnell, Jr. has made it clear he is prepared to use the power of the U.S. District Court, if necessary, to ensure the state of Rhode Island provides adequate funding for adults with development disabilities.

That population of about 4000 people is protected by a 2014 civil rights agreement set to expire in 2024, assuming the Court approves.

Time is already drawing short for the state to make the changes necessary to achieve compliance by the 2024 deadline. The process would require approval by the General Assembly and would have to be running smoothly for a year before the state is released from federal oversight.

But the COVID-19 pandemic has added urgency to the situation, because the state’s compliance depends on some three dozen private service providers that are in such shaky ground financially that they won’t survive the next six months without extra cash.

That was the picture presented to McConnell at a hastily-called virtual court hearing on Zoom Nov. 24.

McConnell gave state officials and advocates until Dec. 18 to figure out a solution to providers’ short-range fiscal problems.

McConnell said he saw “two levels of crisis:”

• an immediate one that threatens the viability of social services for adults with developmental disabilities over the next six months, with conditions changing “second by second, moment by moment, and day by day.”

• a system-wide crisis around the state’s ability to meet the requirements of the 2014 consent decree.

Since last summer, the state has been engaged in a court-ordered planning effort to devise solutions to the systemic issues and present McConnell with a long-range implementation plan by June, 2021.

But the judge said he called Tuesday’s hearing in response to a preliminary fiscal report from an independent monitor, who said the burdens of coping with the coronavirus pandemic posed more immediate threats to service providers.

Cooperative Solution Preferred

McConnell asked the monitor, A. Anthony Antosh, to convene a “collaborative” public-private group to come up with an immediate funding solution by December 18. The collaboration should include state officials, lawyers for the U.S. Department of Justice, and representatives of the community, including the head of a provider trade association, Tina Spears, McConnell said.

Lawyers for the state, including Kathleen Hilton and Marc DeSisto, framed it as a continuation of an active collaboration that already has resulted in one hazard pay initiative.

McConnell said he much preferred a solution devised by the state and its partners in the community, rather than having to resort to a court order.

But he made it clear that one way or another, he considers it his responsibility, as a judge in the “third and co-equal branch of government,” to protect the population with intellectual and developmental disabilities in Rhode Island.

“The advisable way is for the good and smart people to sign off and figure out how to do it,” the judge said.

After hearing from budget director Jonathan Womer, health and human services secretary Womazetta Jones, and other state officials, McConnell said “there is no doubt we have an awesome team in the executive branch whose hearts and minds and souls are in the right place.”

McConnell acknowledged that “quite a bit of money” ($20 million) has been allocated to developmental disabilities during the pandemic, but he said “it has become inadequate as the system currently exists.”

The state “may have fiscal handcuffs on,” as Womer, the budget director, explained, but “for the Court, it’s of no import where the money comes from.”

The state and “all its entities” are part of a consent decree that enforces the civil rights of adults with developmental disabilities under the Americans with Disabilities Act, McConnell said.

“But make no mistake,” he said. If necessary, “the Court will use all its powers to order the state and all its entities to come up with the money,” he said.

Effects Of Pandemic “Unrelenting”

The trade association representative, Tina Spears, director of the Community Provider Network of Rhode Island, (CPNRI) illustrated the current problem in human terms.

In the first three weeks of November, a single provider agency experienced COVID- 19 infections in four of its 18 group homes. Sixteen staff members and eight group home residents tested positive, with four residents requiring hospitalization. Three staffers had to quarantine at home, and one staff member died, Spears said.

Meanwhile, the agency’s day programming, which included expansive work-related supports and other services, is running at 30 percent capacity, she said, running into debt at an exponential rate.

“The situation on the ground is unrelenting,” she said.

Kayleigh Fischer, Director of Budget and Finance for EOHHS, laid out the various federal initiatives, totaling $20 million, that have helped service providers stay afloat during 2020.

And Womer, the budget director, explained the fiscal challenges posed by COVID-19, which has decimated revenue and has saddled the state with a projected budget deficit of $250 million to $275 million by the end of the fiscal year in June, depending on who’s counting.

“It’s confusing. There are a lot of moving pieces and a lot of federal guidance that’s constantly changing,” he said.

“We have more restrictions on spending now because of the pandemic,” Womer said. “We are reducing spending anywhere we can to contain the deficit,” he said.

The state can spend federal grant money like the $1.6 billion allocated to Rhode Island for coronavirus relief, Womer said, but among the exclusions are spending for workforce bonuses, as well as replacing state revenue in the federal-state match for the Medicaid program.

Medicaid is the program that funds the developmental disability service workforce.

Spears Highlights Below-Market Funding

Spears acknowledged that without the emergency funding the state has allocated so far, the developmental disability service system already would have folded.

She said she appreciates the fiscal challenges Womer described, but “this has been the rationale for underfunding our workforce for the last decade.“

In 2011, the state deliberately set reimbursement rates for private providers of developmental disability services below market costs, Spears said. “This fact cannot be overstated,” she said.

The rate-cutting, which resulted in layoffs and sharp wage reductions, has been documented in an exhaustive $1.1 million study commissioned by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH), and by a separate special legislative commission.

Over time, Spears said, the flawed fiscal foundation of the reimbursement model has made it increasingly difficult for providers to recruit and retain qualified workers, a situation that has only been exacerbated by the pandemic.

Today’s average pay for direct care workers is $13.18 an hour, but provider agencies say they must pay $25 to $30 an hour to get workers to go into COVID-positive group homes or homes where residents are in quarantine, according to Antosh, the court monitor.

Antosh has proposed the state deploy $2 million a month from unused developmental disability funding to boost the pay of direct care workers to $20 an hour and cover other expenses related to COVID-19.

Separate from Antosh’s proposal, Spears said, CPNRI has asked Governor Gina Raimondo for COVID Cares Act relief funding for incentive pay for workers in coronavirus-positive group homes and for emergency relocation funds. These funds would be used for temporary quarters to make sure that COVID-negative group home residents can be separated from housemates who are infected.

She did not provide additional detail on that pandemic-related funding request.

Instead she focused her remarks during the hearing on separate recommendations for addressing the structural problems in the fee-for-service reimbursement model.

The state should raise entry-level wages to $17.50 an hour immediately, with a boost to $20 an hour in the fiscal year beginning next July 1, she said. Spears said the state has received an increase in the federal share of the federal-state Medicaid program which has not been passed along to service providers.

In addition, there should be an expedited, yet comprehensive, review of the rate structure that includes the cost of implementing policies mandated by the 2014 consent decree, Spears said. The current rate structure does not support the agreement, she said. She said changes in the rate structure should be ready to be incorporated in the budget that begins next July 1.

The DOJ has found that the overhaul of the developmental disability service system adopted in 2011 incentivized segregated care, in violation of the Integration mandate of the Americans With Disabilities Act.

During the court hearing, Womazetta Jones, the Health and Human Services Secretary, said she wants to work with service providers to do what is feasible and equitable, given all the needs of vulnerable populations.

McConnell replied to Jones:

“As a citizen, I have long admired your service,” he said.

But he pointed out that Rhode Islanders with developmental disabilities have a protection that other vulnerable populations do not.

The DOJ found, and the state agreed, that those with developmental disabilities have experienced violations of their constitutional rights “that can’t continue,” the judge said.

“I don’t want to disagree with anything, but I want to focus on why we are here,” McConnell said.

New Olmstead Consent Decree Coordinator To Guide Court-Ordered ADA Compliance in RI

By Gina Macris

Rhode Island is looking for someone to coordinate its compliance with a 2014 federal civil rights agreement affecting adults with developmental disabilities – for the sixth time in as many years.

The state created the position of Consent Decree Coordinator at the insistence of an independent court monitor who wanted someone with the clout to break through the “silos” of three departments of state government and hammer out an integrated response to the compliance steps in the agreement.

Since the spring of 2019, the position has been filled by Brian Gosselin, the Deputy Secretary of the Executive Office of Health and Human Services and its former Chief Strategy Officer.

Brian Gosselin

His tenure has been marked by controversy that has included a dispute – or misunderstanding, as Gosselin put it- over the independence of a community organization which was settled only by a letter from the U.S. Department of Justice.

Members of the community organization, the Employment First Task Force, have more recently described Gosselin’s consent decree work as “invisible.”

Now the state is under a court-ordered timeline to implement sweeping changes and it has decided to seek an independent contractor, reporting to Claire Richards, Governor Gina Raimondo’s Executive Counsel, to become the consent decree coordinator.

Louis DiPalma

The move won kudos from State Sen. Louis DiPalma, D-Middletown, the General Assembly’s most prominent watchdog on services for adults with developmental disabilities.

“I applaud the state, specifically Governor Raimondo, for elevating the position, by having the CDC (consent decree coordinator) report directly to her office, independent of any state agency,” DiPalma said in a statement.

However, Kerri White, Director of Public Affairs for EOHHS, said that the new consent decree coordinator will not be the first to report to the Governor’s Executive Counsel.

“The new Consent Decree Coordinator will continue to work with the established EOHHS, BHDDH, DHS and RIDE team but will have an avenue of escalation through the Governor’s Executive Counsel in order to maintain the compliance momentum achieved through the previous Consent Decree Coordinator,” White said in a statement.

She referred to the agencies involved in the state’s combined consent decree response, including the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the Department of Human Services (DHS), and the Rhode Island Department of Education (RIDE), as well as the Executive Office of Health and Human Services, which supervisory authority over BHDDH and DHS.

White said both Gosselin and the first coordinator, Andrew McQuaide, have reported to Claire Richards.

Midway through McQuaide’s tenure, his position in the bureaucratic heirarchy was lowered, when he was transferred to BHDDH. Three successive coordinators, Mary Madden, Dianne Curran, and Tina Spears, all worked from EOHHS.

Madden, who succeeded McQuaide, and Curran, who followed Madden, both had “substantial interaction” with Claire Richards, White said. Spears succeeded Curran. Gosselin, who by that time had twice served as interim coordinator, took over from Spears.

The appointment of Gosselin as coordinator in 2019 sparked criticism in the community, most notably from DiPalma, who said the choice of a salaried employee with loyalties to the state posed a conflict of interest.

“If you’re working for the state, I don’t know how you work for the 4,000 people” the consent decree seeks to protect, DiPalma said.

At the time, an EOHHS spokesman said Gosselin would bring “stability” to the coordinator’s job, and the state’s principal lawyer for the consent decree case said it was immaterial, legally, whether the consent decree coordinator was a state employee or an independent contractor.

DiPalma agreed that stability was critical but said “no rationale has been given for why we have had five coordinators in the last five years.”

Later in 2019, members of the Employment First Task Force, a community-based advisory organization created by the consent decree as a bridge between the public and government, told the DOJ about a disagreement with Gosselin.

They said Gosselin had attempted to curb the group’s contacts with the DOJ unless a particular outreach attempt had state approval. The matter escalated, until the DOJ sent a letter to the state’s lawyers that clearly underscored the independence of the Task Force.

DOJ lawyers said they hoped the situation was indeed a misunderstanding, as asserted by the state. The letter went on to say that members of the Task Force are “independent stakeholders with a role in the successful implementation of the consent decree.”

“Indeed, any limitation on open communication would undermine the intended autonomy of the Task Force,” the DOJ letter said.

Until a few days ago, Nov. 17, it was not clear that the state was, in fact, looking for a new consent decree coordinator to succeed Gosselin.

Earlier in November, a BHDDH spokesman said that the state had not advertised for a consent decree coordinator but had sent out a posting to state-contracted temporary staffing agencies for “temporary project management support” to “help organize our pathway to 2024”. That is the year the consent decree is scheduled to expire, assuming full compliance is achieved. The opening was advertised from Oct. 19 to Nov. 9, a BHDDH spokesman said.

“The State recognizes and appreciates Brian Gosselin’s great work on the consent decree and the many other projects that he oversees in his role as Deputy Secretary & Chief Operating Officer for the Executive Office of Health and Human Services,” said the BHDDH spokesman, Randal Edgar.

“Our team structure will remain in place and our key points of contact for the Court Monitor and the Community will remain unchanged,” he said.

“The State team values all of the stakeholder partnerships and recognizes the need for responsiveness to stakeholder concerns,” Edgar said.

The project management job description appeared to be very similar, if not identical, to that of the consent decree coordinator.

After requests for clarification from Developmental Disability News, White, the EOHHS spokeswoman, said that to eliminate any confusion, the state planned to re-post the position with the title of Consent Decree Coordinator.

“Since we are using a staffing agency to hire the Coordinator, we were limited to a prescribed list of job titles from the third-party staffing search agency. We understand this has caused confusion,” White said in an email.

White said the staffing agency that provides the successful candidate will pay the new consent decree coordinator and then bill the state. The budget for the consent decree coordinator is $100,000 a year. That allocation has not been used since Gosselin was appointed consent decree coordinator. Gosselin makes $146,655 as deputy secretary of EOHHS, according to state payroll data.

He will remain in the coordinator’s post during the transition, White said.

Court To Hear Plan To Shore Up RI DD Providers

By Gina Macris

A federal court monitor says Rhode Island must release $2 million a month designated for adults with developmental disabilities to keep service providers afloat between December and June.

The money would be used exclusively to recruit and retain new workers and boost the pay of existing staff to a minimum of $20 an hour, as well as cover the cost of personal protective equipment and other expenses related to COVID-19.

A. Anthony Antosh submitted a three-page report outlining the rationale for his plan to the U.S. District Court Nov. 18 and asked the state to tell the court how it will address the recommendations by Nov. 30. Chief Judge John J. McConnell has moved up the deadline, scheduling an on-line hearing on the status of consent decree compliance at 9 a.m. Tuesday, Nov. 24.

Antosh said that a rise in coronavirus cases has affected the population with intellectual or developmental disabilities in several ways:

• More people are sick

• Private services providers and families independently managing their loved ones’ programs can’t find staff

• The number and frequency of employment-related services and supports for community activities required by the consent decree has declined

Under the current fee-for-service system, providers are increasingly constrained in their ability to file claims with the state, exacerbating their already-precarious financial condition.

Antosh indicated that the state could release $2 million a month to service providers for the next six months because average monthly spending has decreased by roughly that amount from April through October, when compared with the previous six-month period.

He warned that the consortium hired by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to review the system top to bottom concluded that private provider agencies were fiscally “fragile and profoundly undercapitalized” even before the pandemic hit. Now their financial position is even worse, Antosh said.

Private service agencies, which support about 83 percent of the population protected by the consent decree, are using most of their resources to serve adults in group homes, where COVID-19 cases are multiplying, Antosh said. Citing a daily report of new cases provided by BHDDH, he said 28 percent of all positive cases in residents, 35 percent of all positive cases in staff and 21 percent of all hospitalizations have occurred in the past six weeks.

A total of 580 staff and residents in 147 group homes – about half of the 291 congregate care settings in the state – have tested positive since the pandemic began, Antosh said.

Source: A. Anthony Antosh, Court Monitor

Several agencies report they are unable to get staff unless they pay them $30 an hour in COVID-positive group homes and $25 an hour in quarantined homes, where the COVID status is uncertain. Even then, they cannot find enough workers to fill the state staffing requirements, Antosh said.

People with developmental disabilities living in family homes, meanwhile, “are receiving only limited supports related to employment and integrated community and day activities,” the monitor’s report said.

The monitor said the state “has demonstrated good faith in attempting to address the impact of COVID-19” in multiple ways, including:

• Special payments early in the pandemic that allowed providers to bill at pre-COVID rates for two months

• Recent approval of an additional $3 million from the CARES Act to provide up to $1,200 in “payroll support” for existing full time direct care staff or recruitment funds for new staff. That boost is also time-limited, Antosh said.

Despite these and other initiatives, Antosh said, “there is significant concern that, if additional resources are not provided for the remainder of the current fiscal year, providers will be unable to recruit and retain sufficient staff needed to provide the employment and community services required by the Consent Decree.”

Antosh said BHDDH figures show a decrease of $11,444,874 in expenditures for developmental disabilities from April to October, when compared with the previous six-month period, an average of $1,907,479 per month. His plan recommends the state put that money to use by allocating $2 million a month, beginning in December, through the end of the fiscal year June 30, 2021.

As has been the case with other COVID-funding initiatives, providers should submit a proposal and a rationale, Antosh said. He said those who direct their own programs or who live independently or with families also should have access to these funds.

The public may observe the court hearing on line by going to the calendar page of the U.S. District Court and entering the date, November 24, and the name of Judge McConnell. To access the calendar click here.

OP-ED: RI Must Do Better By People With I/DD

By Terri Cortvriend

The COVID-19 pandemic has hit hardest the areas and populations that were already struggling, since they had the fewest resources for adaptation and safety. We’ve seen the outsized effects on the poor and on minorities. Another group that it has been disproportionately hurt is adults with intellectual/developmental disabilities (I/DD).

Photo Courtesy of RI Rep. Terri Cortvriend

Here in Rhode Island, adults with I/DD have not been provided adequate resources for many years. Before the pandemic, a federal judge was already mulling the possibility of ordering further overhaul of our troubled system of services. And then the pandemic shut down most day programs and employment opportunities, leaving this very vulnerable population without critical supports. Residents and underpaid staff at group homes have been at risk for illness, and those living at home face isolation and a reduction or loss of in-home support services. Agencies that serve them, which have mostly operated on the financial brink for years, are in danger of going under permanently.

The challenges of the pandemic and recovery from it threaten the already sub-par progress the state has made toward fixing this system. A Senate task force led by my colleague and fellow Aquidneck Islander, Sen. Louis DiPalma, has been shedding light on the obstacles, which include a fee-for-service structure that discourages innovation and integration.

Rhode Island must do better for its residents with I/DD. Every individual served is a deserving person whose needs include meaningful activities that support their personal goals and a valued role in their communities.

I urge my colleagues in the House to get on board with the Senate, where Sen. DiPalma has long worked to call attention to the need for better funding and a more workable system of supports for adults with I/DD. We need to join him in fully recognizing and supporting the importance of the work that must be done to provide enriching and effective services to Rhode Islanders with I/DD. We may be deeply ashamed of our state’s history – from the not so distant past – of “dumping” people with I/DD at the notorious Ladd School, but have we really come very far if we are not providing them with the means they need to have a fulfilling life in the community?

RI State Representative Terri Cortvriend, a Democrat, represents District 72 in Portsmouth and Middletown.

COVID-19 Claims 3 More Lives in RI DD Group Homes; Advocates Press For Justice

By Gina Macris

As the death toll from the coronavirus has ticked up in Rhode Island group homes for adults with developmental disabilities during the last two weeks, two community organizations have turned their focus to the multiple aspects of social justice - in health care equity and in issues of race.

As of June 3, a total of 10 group home residents have died from COVID-19, or 3 more than were reported about two weeks ago, on May 19, according to a spokesman for the state Department of Behavioral healthcare, Developmental Disabilities and Hospitals (BHDDH,)

Those who have died are included in a count of 138 persons with developmental disabilities in congregate care who have tested positive for the disease. The total represents an increase of 16 cases since May 19, according to figures provided by the spokesman.

Of all those who have become ill, 17 persons have been sick enough to be hospitalized at one point or another, the BHDDH spokesman said.

While the incidence of coronavirus is on the wane in Rhode Island, Disability Rights Rhode Island (DRRI) has been scrutinizing what it says are discriminatory state health care guidelines which could still be used in the future to ration care if the hospital system becomes overwhelmed.

A spokesman for the Rhode Island Department of Health said DRRI and several disability-related partner organizations have provided “important feedback” that will be considered as health officials move forward.

The developmental disabilities community has been preoccupied in the last few months with issues of equity in access to protective equipment and health care resources for vulnerable people, but ongoing concerns about civil rights should be put in a broader context in which racism permeates, said Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI).

Spears and Michael Andrade, President of the CPNRI Board of Directors, issued a statement June 2 saying that CPNRI “stands in solidarity with the people and communities in our state and across the country who continue to bear the physical, emotional, and economic effects of racism” - including people of color who belong to the direct care workforce and families supported by CPNRI.

The statement was prompted by the death of George Floyd, a 46 year-old black man who suffered a heart attack May 25 after a Minneapolis police officer put his knee to the man’s neck for nearly nine minutes. Floyd’s death has roiled the nation, from protests in the streets to politics at the highest levels in Washington.

“We speak out against the historical and current violence against Black, brown, and other members of marginalized communities,” Spears and Andrade said. “As a network, we remain committed to upholding social justice and dismantling systems of oppression and discrimination that further violence and neglect,” the pair said, pledging to work with other like-minded groups throughout the state and the nation to “combat the root causes and outcomes of racism.”

Meanwhile, Disability Rights Rhode Island (DRRI) has recommended changes to eliminate what it says are inherently discriminatory provisions in recent guidelines issued by the state Department of Health that could be used in allocating health care resources.

DRRI acknowledges that the discussion remains theoretical – for now – as hospitals have not exceeded their capacities and emergency facilities set up to deal with an overload of coronavirus patients have remained unused.

In a May 19 letter to the Director of Health, Nicole Alexander-Scott, MD MPH, DRRI and other partner organizations have said the “Crisis Standards of Care”, issued April 25, leave the door open for discrimination against those with disabilities and older Rhode Islanders by allowing health care officials to make subjective decisions about patients’ long-range survival or quality of life after discharge.

In response to a query from Developmental Disability News, a DOH spokesman said the department has “a commitment to ensuring equitable and just access to care for all Rhode Islanders, especially more vulnerable populations.

“We worked hard to try to have that commitment reflected in the document that was developed. Having said that, this is important feedback that we are going to consider internally as we look forward and think about ways that we can better ensure health equity for everyone throughout the state,” said the spokesman.

DRRI noted that Rhode Island’s principle for ensuring equity in access to healthcare “acknowledges the need for transparent criteria for allocating resources that are free from influence by inappropriate factors such as race, gender, socioeconomic status or sexual identity.” But the letter said that “disability and age” are missing from the list of inappropriate factors. This omission “appears intentional,” since the triage assessments and criteria described in the guidelines authorize “explicit and implicit” consideration of age and disability in excluding patients from access to scarce resources.

Among other things, the guidelines allow hospitals to screen out patients having a “medical condition associated with a short life expectancy” from access to critical healthcare resources, DRRI said. “Because ‘short life-expectancy’ is not defined, hospitals and clinicians are free to interpret the term and make subjective judgments regarding its meaning,” the letter said.

Many people who are aging or have disabilities also experience medical conditions that can be perceived as shortening life expectancy, and are at higher risk for being excluded from consideration based on clinicians’ subjective decisions, the letter said.

Although the guidelines take into account some conditions which are accommodated during the triage process, they fail to recognize pre-existing impairments such as limitations in mobility or speech, which would have an effect on an assessment of traumatic brain injury, DRRI said.

Nor do the guidelines mention federal laws applying to hospitals that prohibit discrimination on the basis of disability and require hospitals to make reasonable modifications to policies and practices to allow persons with disabilities to benefit from the services provided.

In a detailed analysis of the DOH guidelines, DRRI described the pertinent sections of federal anti-discrimination laws: Title II of the Americans With Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 1557 of the Patient Protection and Affordable Care Act (ACA.)

DRRI recommended revising the Crisis Standards of Care to comply with civil rights laws by eliminating criteria linked to survival beyond the illness which prompted the hospitalization at hand and by requiring hospitals to make accommodations for disabilities, like limitations in mobility and communications skills.

It also recommended that DOH broaden the grounds for appeal of triage decisions to include discrimination on the grounds of disability. The current grounds for appeal, permitted only for technical or procedural injustices, are overly narrow, DRRI said. To read the letter in its entirety, click here.

The letter was signed by Morna Murray, executive director of DRRI, as well as Steven Brown, executive director of the American Civil Liberties Union in Rhode Island; Amy Grattan, executive director of the Paul V. Sherlock Center on Disabilities at Rhode Island College; Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, Advocates in Action; Joanna Scocchi, director of the ARC Rhode Island Family Advocacy Network; Debra L. Sharpe, executive director of the Brain Injiury Association of Rhode Island; Spears, the CPNRI director, Marc Anthony Gallucci, executive director of the Ocean State Center for Independent Living; and Kim M. Einloth and Kiernan O’Donnell, co-chairs of the Rhode Island Employment First Task Force.

RIPIN, RI DD Agency, Plan Virtual Town Hall on COVID-19

By Gina Macris

How should Rhode Island re-open its services for adults with developmental disabilities as the incidence of COVID-19 wanes?

The Rhode Island Division of Developmental Disabilities and the Rhode Island Parent Information Network have scheduled a virtual meeting on Zoom Friday, June 5, from 10 am. to noon to get public comment on the transition.

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

During the registration process, attendees will be invited to choose to participate in one of three smaller group discussions for consumers and families, providers, or advocates.

Participants also may submit questions in advance to BHDDH.AskDD@bhddh.ri.gov 

Two Additional Deaths Reported Among RI DD Group Home Residents

The incidence of coronavirus in Rhode Island’s group homes for adults with developmental disabilities remains relatively low – at a little over 7 percent – but in the last two weeks there have been two more deaths among residents in congregate care, for a total of 6 fatalities.

Of some 1180 persons living in private or state-run group homes, 88 have tested positive for COVID-19, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.) Seventeen of the 88 are hospitalized, the spokesman said May 4.

Previously, one group home staff member was reported as a casualty in the COVID-19 pandemic. No updated figures on additional deaths among staff, if any, were available, the BHDDH spokesman said.

The release of the Department of Health’s (DOH) 34-page “Crisis Standards of Care Guidelines” April 30 has drawn criticism from Disability Rights Rhode Island for failing to offer specific assurances that those hospitalized would not be subject to health care rationing because of their disabilities.

“We find the standards concerning,” said Morna Murray, the DRRI executive director. “The state has distanced itself from specific directives and is relying on hospitals to develop their own individual standards.”

She said the standards are “problematic and vague with respect to prioritization, triage processes, exclusion from treatment, and the suggested triage and decision-making tools in the Appendix,” Murray said.

A DOH spokesman responded that state’s health agency has a “commitment to ensuring equitable and just access to care for all Rhode Islanders, especially more vulnerable populations.

“We worked hard to try to have that commitment reflected in the document that was developed. Having said that, this is important feedback that we are going to consider internally as we look forward and think about ways that we can better ensure health equity for everyone throughout the state,” said the spokesman, Joseph Wendelken.

Murray said DRRI will follow up with partners in the community and other experts to provide a formal response to “these unsatisfactory standards.”

The standards are not now in effect and would be implemented, under the direction of DOH, only if the capacity of the overall health care system is overwhelmed, DOH explained in a press release accompanying the document. To read it, click here.

“The swift construction of temporary surge or “alternate hospital sites” in Rhode Island as a part of the State’s coronavirus disease 2019 (COVID-19) response provide another buffer from the need to implement these plans, should Rhode Island experience a surge in the near future,” Wendelken said in statement.

DDD CLARIFIES RULES ON STAFFING

In a recent COVID-19 update, the state Division of Developmental Disabilities clarified earlier messages which some found confusing about whether those who independently direct a loved one’s program of supports may hire a family member to provide care.

The most precise information is that “during the COVID-19 pandemic, people who ‘self direct’ can hire any qualified adult, including family members and parents, with the exception of legal guardians.”

BHDDH officials are conducting an additional legal review to determine whether individuals receiving services who have legal guardians can hire those guardians as employees to provide supports that usually would be provided by staff outside the family, according to the newsletter.

Employees typically must pass a background check before they are hired, according to the newsletter, but during the COVID-19 crisis, the rule has been relaxed to allow for a check to be conducted within 60 days after the end of the current state of emergency.

The newsletter covers additional COVID-19-related topics of interest to those with developmental disabilities, their families, and those who work in the developmental disabilities field. To read the newsletter in full, click here.

This article has been corrected to reflect the fact that there have been two additional deaths of Rhode Islanders with developmental disabilities in congregate care in the last two weeks; one April 21 and another April 28,

COVID-19 Hits DD Group Homes In RI

By Gina Macris

A total of 23 adults with developmental disabilities in Rhode Island group homes — not quite 2 percent of all the 1180 adult residents in congregate care in the state — have tested positive for the coronavirus, as of April 9.

All but four of the residents live in homes run by private service providers licensed by the state. The four exceptions live in group homes of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), a departmental spokesman said April 9. He said eight BHDDH employees also have tested positive.

Of the 23 group home residents with confirmed cases, 9 were hospitalized the morning of April 10, the BHDDH spokesman said. The hospitalizations represent about 39 percent of all adults with developmental disabilities in congregate care who have become ill with COVID-19. That figure is more than four times the 9 percent of the coronavirus-positive population statewide that has required hospitalization, according to figures released by the office of Governor Gina Raimondo April 9.

Tina Spears, executive director of the Communitiy Provider Network of Rhode Island (CPNRI), said the proportion of hospitalizations among residents underscores the general vulnerability of the developmental disabilities population, although she added that she has not heard that any of those hospitalized are in critical condition.

The BHDDH spokesman, Randal Edgar, said: “Many DD group home residents are older and have medical conditions that make them more vulnerable to the COVID-19 pandemic. BHDDH is very concerned about their wellbeing and that is why we are working around the clock to do everything we can to provide care and monitoring and make sure they receive any medical services that are needed.”

Among support staff in the private sector, no more than two dozen have tested positive, but that figure is likely to change from day to day, Spears said April 10.

More than half of the two dozen provider agencies belonging to CPNRI, a trade association, have no infections among staff or participants, she said.

So far, providers are coping, Spears said, but more specific planning is needed to shore up the resources of the private agencies, which are stretched thin in normal times.

State Sen. Louis DiPalma, D-Middletown, said the state needs a formal Emergency Response Plan to address the care of individuals with developmental disabilities who become ill. He said he is trying to organize a collaborative effort to drawing up such a plan.

Among the unanswered questions: What happens in a surge of cases among group home residents, if too many staff also become ill and are unable to care for them?

All agencies have adopted aggressive cleaning protocols – sometimes as frequent as every four hours – and other strict precautionary measures, like body temperature checks, in cases where individuals are particularly vulnerable, but the providers are primarily acting on their own initiatives rather than as part of an official directive.

Efforts are made to quarantine group home residents who have tested positive and those who may have come into contact with the virus but have not been tested. In addition to stepped-up cleaning protocols, group home operators control traffic patterns within a facility and assign only designated staffers to the individuals under quarantine and those who have tested positive.

Staffers who may have come into contact with someone who has tested positive outside of their work assignment rare instructed to self-quarantine at home for two weeks.

On April 7, the office of Governor Gina Raimondo announced a 10 percent increase in developmental disability reimbursement rates for residential services. The rate increase, retroactive to April 1, is set to expire June 30.

The rate increase “recognizes the additional costs organizations are facing related to the COVID-19 crisis,” according Edgar, the spokesman for BHDDH.

“The Governor, EOHHS (the Executive Office of Health and Human Services) and BHDDH are committed to meeting the needs of our state’s most vulnerable residents and supporting our providers,” Edgar said in a statement.

“Our intention is to help provide stability to our state’s DD (developmental disability) providers through this rate increase as well as the recent “retainer payments” (advance funding) which went into effect last week,” the statement said.

Spears, however, said the rate increases apply only to a small portion of the rate structure, while the crisis has had an impact on all operations, including daytime programming, and has resulted in unprecedented costs that threaten the viability of the private provider system.

For example, some agencies have had to offer double-time pay to incentivize employees to work in group homes where there has been an infection.

“There’s no way” they will get coverage if staff are “not incentivized to take the risk,” she said.

But state officials “are working with us at this point,” Spears said. “We’ll take them at their word,” she said.

For weekly updates on COVID-19 from BHDDH, sign up for the newsletter of the Division of Developmental Disabilities by clicking here.

New RI BHDDH Director Cancels Plan For "Health Home" Case Management Model

By Gina Macris

This article has been corrected and updated.

A costly and controversial proposal for privatizing the management of individualized services for adults with developmental disabilities in Rhode Island has been axed by the new director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The director, A. Kathryn Power, acted out of concern that the state would face a “financial cliff” after an initial start-up period almost entirely funded by the federal Medicaid program, according to a BHDDH spokesman.

The managed care initiative, which Medicaid has labeled a Health Home, would have created a third-party entity to plan, coordinate and monitor services on a person-by-person basis.

“Director Power was concerned whether the Health Homes initiative represented the right direction for consumers and families, as well as the Department, given the temporary nature of the federal funding,” said the spokesman, Randal Edgar.

The Medicaid program offers 90 percent federal funding Health Homes for two years, but after that, the state would be responsible for nearly half the cost of maintaining the Health Home. On Feb. 28, a BHDDH spokesman said that long-term, the Health Home would have cost the state about $5 million a year.

Throughout the past year, the Division of Developmental Disabilities “conducted extensive stakeholder engagement around the design” of a Health Home for adults with intellectual or developmental disabilities, the spokesman said. “The scope and the projected enrollments were then used to guide the proposed rate methodology and cost analysis,” resulting in future costs estimated at about $5 million, the spokesman said. (It was incorrectly stated in an earlier version of this article that BHDDH had not calculated the long-term dollar amount that the state would have borne before Power cancelled the plans for a Health Home application.)

Power had been aware of community opposition to the Health Home idea. That factor, “coupled with her own experience of looking at the integrated health home model, led her to question the viability of this initiative,” Edgar said. Power returned to BHDDH after about 15 years in the federal Substance Abuse and Mental Health Services Administration (SAMHSA).

She said BHDDH will continue to pursue a case management model to satisfy a Medicaid rule that states eliminate conflicts of interest in three functions:

• funding

• delivery of services

• case-management; the planning,coordination, and oversight of supports.

Currently the state controls a critical element of the planning phase, an assessment called the Supports Intensity Scale (SIS.). The score from the SIS is fed into a secret algorithm that determines funding for a particular person,

The SIS was designed by the American Association on Intellectual and Developmental Disabilities to assist planners in compiling a program of services meeting the needs and preferences of particular individuals, an approach compatible with the Integration Mandate of the Americans With Disabilities Act. The Mandate, reinforced by the Olmstead decision of the U.S. Supreme Court, says that individuals with disabilities have the right to services and supports they need to live, work, and play in their communities.

Using the SIS to determine individual appropriations resulted in a cookie –cutter approach that incentivized a system of sheltered workshops and day care centers when it was begun in 2011 as a key feature of Project Sustainability, a fee-for-service reimbursement system for privately-run developmental disability services.

Two years later, the operations of one of those workshops attracted a civil rights investigation from the U.S. Department of Justice that has led to federal oversight of the developmental disability service system until 2024. The key goal: to correct violations of the ADA’s integration mandate.

The Health Home proposal would not have touched the link between funding and the SIS, which was singled out for criticism by the DOJ in 2014 findings that led to a statewide consent decree.

Opposition to Health Homes has come from the special legislative commission which recently concluded a study of Project Sustainability, the Developmental Disability Council, the Community Provider Network of Rhode Island, and many families also have raised concerns about the Health Home.

In general, the critics have said a Health Home would have created an expensive and unnecessary bureaucracy at the same time that the services themselves are underfunded. .

The wages of direct care workers and related staff remain below the levels offered by Connecticut and Massachusetts for the same work, generating high turnover. The agencies employing the workers teeter on the edge of solvency, according to a recently released report compiled by BHDDH consultants. Families who manage a loved one’s program themselves also have had trouble finding staff.

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.

RI Project Sustainability Commission To Meet Jan. 14 To Wrap Up Recommendations

By Gina Macris

The special legislative commission studying the way Rhode Island pays for developmental disability services will hold its final meeting Jan. 14 to summarize some 70 recommendations that have been submitted by the commission’s 21 members, according to its chairman, State Sen. Louis DiPalma, D-Middletown.

The panel, which began its deliberations during the fall of 2018, has been dubbed the Project Sustainability Commission after the name of the fee-for-service reimbursement system for private agencies that deliver most state-funded social services to some 4,000 adults with developmental disabilities.

Project Sustainability, enacted by the General Assembly in 2011, has been widely criticized by service providers and families as an excuse to cut funding.

Project Sustainability is under review by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, which has hired outside consultants to expand its analytical capabilities. The review, expected to conclude in June, is separate from the commission.

The commission meeting on Jan. 14 will begin at 2:30 p.m. in the Senate Lounge of the State House.

DOJ And RI Can't Agree On Next Consent Decree Monitor; Judge McConnell To Decide

By Gina Macris

For more than four months, the U.S. Department of Justice (DOJ) and the state of Rhode Island have been unable to agree on a new monitor of the state’s compliance with a 2014 civil rights consent decree affecting adults with developmental disabilities.

The stalemate now leaves the choice to U.S. District Court Judge John J. McConnell, Jr., who will consider apparent differences between the DOJ and the state over the extent of the monitor’s authority in making his selection. McConnell must choose from up to six candidates – a maximum of three names submitted by each side.

In the absence of a monitor, whose duties include mediation of disputes, a disagreement simmered between the state’s consent decree coordinator and an Employment First Task Force. The argument, concerning the the independence of the task force, escalated to the point of prompting a letter from the DOJ to the state’s lawyers.

The monitor’s job became vacant with the retirement of Charles Moseley, who notified all concerned on July 9 that because of health concerns, he would step down effective Sept. 30.

The state and the DOJ had 30-days to agree on a replacement once Moseley gave his notice, according to the consent decree. After 30 days, the decree says, the judge makes the selection from the candidates submitted by the two sides.

McConnell initially set a deadline of Sept. 30 for the two sides to conclude discussions, but at the end of September, he extended the deadline to Nov. 25, requiring the DOJ and the state to check in with him every two weeks on the progress in talks.

Earlier this month, he asked the two sides to submit statements on their respective views of the role of the consent decree monitor. That deadline also was extended, from Nov. 19 to Nov. 22.

The statements appear similar in many details but suggest that the DOJ envisions greater independence for the monitor than does the state. The DOJ has asked for a phone conference with the state and the judge on the matter of the monitor’s selection.

During the time there’s been no monitor, comparatively small differences between the state’s consent decree coordinator and an Employment First Task Force (EFTF) have coalesced into a dispute over the independence of the Task Force that reached the ears of the DOJ in at least one telephone call.

The EFTF was created by the consent decree to serve as a community-based advisory group to the state, the monitor, and the court. Its members are drawn from many non-profit organizations working to improve the quality of life of adults with developmental disabilities, as well as representation from those receiving services and their families. .

The flap appears to finally have been settled with a Nov. 13 letter from the DOJ to the private lawyers representing the state in the consent decree, Marc DeSisto and Kathleen Hilton.

The letter said EFTF members informed the DOJ that the state’s consent decree coordinator, Brian Gosselin, has told the task force not to communicate with the DOJ without Rhode Island’s oversight.

Gosselin, queried briefly by Developmental Disability News after an EFTF meeting Nov. 19, which he attended with Kathleen Hilton, one of the state’s consent decree lawyers, said it was a “genuine misunderstanding.”

The DOJ said in its letter that it hoped it indeed was a misunderstanding that was at the heart of the disagreement:

“We hope that there is simply a misunderstanding or miscommunication here, as such an instruction would be inconsistent with the role of the Task Force as set out in the Consent Decree,” wrote DOJ. While the consent decree required the state to create the task force,” the letter said, the consent decree ”does not contemplate that the State will supervise its work, dictate its findings, or limit its communications. The Task Force’s members are independent stakeholders whose role is to assist in successful implementation of the Consent Decree, including by providing recommendations to the Monitor and State officials.”

“Indeed, any limitation on open communication would undermine the intended autonomy of the Task Force. We ask Rhode Island to help ensure that the channels of communication between the Employment First Task Force, the United States, and the Monitor are uninhibited,” the letter said. It was signed by trial attorneys Jillian Lenson, Victoria Thomas and Nicole Kovite Zeitler.

The letter was not discussed at the most recent EFTF meeting, but there appeared to be some tension between Gosselin and members of the task force around a discussion that began with EFTF questions about the details of the state’s latest quarterly compliance report and ended with the state’s own questions about ways the task force could do more to work in the field to present the benefits of employment.

Members of the task force indicated they do what they can in the community, but added that they are a group of volunteers, most of them with full time jobs. (Some of them are also family members with responsibilities for individuals with special needs.) Task force members emphasized the advisory nature of the committee, echoing the DOJ letter.

If a monitor were in place, he or she might be expected to mediate differences between the consent decree coordinator and the EFTF before they got the point of requiring a lawyer’s letter from one side to the other. In fact, the consent decree explicitly authorizes the monitor to mediate, although the monitor’s recommendations for settling disputes are not binding, unless they happen to overlap with requirements of the consent decree, according to the DOJ.

As to the monitor’s powers, one of the main points made by the DOJ is its view that the monitor is not bound by the preferences of the state or the DOJ, unless the preferences are also required by the consent decree itself. By the same token, the state is not bound by the DOJ’s preferences and vice-versa, according DOJ view.

The state does not spell out that distinction between either sides’s preferences s the requirements of the consent decree. The differences between the DOJ and the state are highlighted in red or blue type in a in an extra document submitted to McConnell by the federal government.

In the highlighted document, the two sides differ on the monitor’s independence in evaluating situations in which there is a change in the relevant facts, like fluctuating numbers of people in the consent decree “target populations”, or subgroups, who are required to be placed in jobs in the community. (There are four “target populations,” depending on whether or not individuals ever were employees of a sheltered workshop or whether they were in high school or young adults at the time the consent decree was signed.)

If, for example, the number of target population members is lower than the number of target population members required to be placed in integrated employment, the state says that monitor will make recommendations or ask advice from the court on how to evaluate the state’s compliance in light of the changed numbers.

The DOJ, however, just asks that the monitor report the changed numbers to the court.. Its preferences would not put any qualifiers on the monitor’s authority to evaluate the new situation.

There is agreement that the annual budget for the court monitor, including expenses any consultants that may be hired, should not exceed $300,000, as required by the consent decree. The state pays the monitor.

But the DOJ points out that the consent decree allows the monitor to ask for increase that would exceed the $300,000 limit. The state’s document omits that point. Any expenditure over $300,000 would require approval by the state, according to the consent decree.

In many respects, the submissions by the state and the DOJ are identical.

Read the state’s view of the monitor’s role by clicking here.

Read the DOJ’s view of the monitor’s role by clicking here.

Read the DOJ comparison of the two documents by clicking here.

Public Slams RI DD Funding Constraints

By Gina Macris

Funding for Rhode Islanders with developmental disabilities works against the individualized care that is at the core of the state’s vision for social services.

That was the assessment from families and developmental disability professionals who responded to an outside consultant’s call for public comment Nov. 5 about the rates and rate structure governing Rhode Island’s privately-run system of care.

Rick Jacobsen * All Photos By Anne Peters

Rick Jacobsen, a representative of the New England States Consortium Systems Organization (NESCSO), hosted an open-ended conversation with an audience of about 40 people during a public forum at the Barrington Public Library sponsored by the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

There is wide concern among families that “in many cases the funding doesn’t seem to be reflecting the support needs” of the individuals in question, said Claire Rosenbaum, who has a daughter with developmental disabilities and also works as Coordinator of Adult Services at the Sherlock Center on Disabilities at Rhode Island College.

Claire Rosenbaum

Rosenbaum said Individuals with varying needs seem to be assigned the same middle-of-the-road funding, according to what she has heard anecdotally in her position at the Sherlock Center.

Much of the discussion focused on the fee-for-service reimbursement system called Project Sustainability that the state implemented in 2011. The state uses a highly scripted interview process, called the Supports Intensity Scale (SIS) to determine the support needs of each adult approved for developmental disability services. Then a closely held algorithm is applied to the SIS score to come up with one of five funding levels for each person.

The core issue is “how you get from the (assessment) score to the level of funding,” said Cliff Cabral, vice president of Seven Hills Rhode Island, a service provider. That process is a “complete mystery,” he said.

Cliff Cabral

He pointed out that the developer of the assessment, the American Association on Intellectual and Developmental Disabilities, did not intend it to be used as a funding tool.

And Cabral noted that the U.S. Department of Justice (DOJ) has criticized the seeming conflict in having the same state agency both performing the SIS assessment and controlling funding for individuals’ services.

“The need to keep consumers’ resource allocations within budget may influence staff to administer the SIS in a way that reaches the pre-determined budgetary result,” the DOJ said in findings that led to a 2014 consent decree with the state to reform disabilities services.

BHDDH is having a series of community conversations about outsourcing individual service planning and case management functions to a third party to comply with federal conflict-of-interest rules, but some who have attended these sessions say they understand that the parameters of the discussion do not include an outside entity taking on the SIS assessment.

Asked for comment after the forum, BHDDH has issued a statement which said that the discussion around the third-party Health Home “has included an expressed interest in a fire wall between assessment and funding. In these discussions, which are informing the case management redesign, BHDDH has agreed to consider future assessment responsibility.”

If the assessment were put in the hands of a third-party, it would relieve the tension, said Mary Beth Cournoyer, who has a son with developmental disabilities.

In Novemeber, 2016, the SIS was updated and the interviewers were retrained. But at the Barrington forum, Claire Rosenbaum said the re-cast “SIS-A” is not very different than the old one. And parents, including Dorie Carder, whose 20 year-old son has developmental disabilities and a medical condition, reported that interviewers are still argumentative, challenging their perceptions of their children and trying to pull the answers to the questions in one direction or another.

Another problem cited at the forum involved appeals by familes and providers who disagree with the funding resulting from the SIS. Rosenbaum said the appeals require a “ton of staff time.” And she said they must be filed annually or every three months, depending on the situation.

Sue Joinson

Sue Joinson agreed, pointing out that the appeals also cost BHDDH social workers extensive time. Joinson, whose daughter has extensive medical needs, also has worked on appeals in her job as director of nursing at the Corliss Institute, a developmental disabilities service provider.

Dorie Carder, the parent with the 20-year-old son, said the first SIS she had was a “horrible experience.”

Dorie Carder

When she appealed the results, she faced off alone against a BHDDH lawyer and a social work supervisor, who challenged her on the medical details of her son’s case. Then, Carder said, she had to wait a year to get the results of the appeal. Still dissatisfied, she went to the Director of Developmental Disabilities, Kerri Zanchi, who ordered a new SIS interview that resulted in a better funding level.

Before the SIS was adopted in 2011, the state accepted a questionnaire called a personal capacity index, combined with a “situational assessment” of the individual in various settings, to come up with an overall evaluation of need, said Joanne Malise, executive director of Living Innovations, which specializes in supporting adults with developmental disabilities in shared living arrangements in private homes.

Connie and John Susa

At one point, John Susa, a parent and long-time advocate, turned the tables on Jacobsen, the consultant, and asked Jacobsen if he thought Rhode Island has a system where “the money follows the person”, meaning that funding is tailored to meet individual needs.

Jacobsen replied, “There are a lot of constraints that intervene with that” personalized funding.

The audience provided examples of the constraints:

• Agencies must bill for services in 15-minute increments for each person during the day and cannot bill for time if a client is absent for any reason, even though the agency must maintain the same level of staffing

• Transportation funding is limited to one round trip daily, not conducive to community integration

• Staffing for community-based activities is linked to specific ratios that depend on individuals’ funding levels, not to the desired destination of any one person.

• For families who direct a loved one’s individual program, money is forfeited if it is not used within the three-month period for which it is allocated, for whatever reason, including staff shortages or hospitalizations.

Joinson recounted how, on the one hand, her medically-fragile daughter’s social service allocation was unused while she was hospitalized, and on the other hand, her social worker pushed back against her attempts to get a residential placement for her daughter, saying that there wasn’t enough money and others had more pressing needs.

“He tried to make me feel guilty,” Joinson said of the social worker, but a residential placement is what her daughter wants. BHDDH is trying to limit high-cost group home placements and instead wants to increase the number of shared living arrangements in private homes, lower-cost options which families and providers alike say often do not work for those with extensive needs.

Meanwhile, Cabral, of Seven Hills, noted that most adults with developmental disabilities do not have families to advocate for them, leaving the agency to act as the family.

The agency cannot turn down the individuals the state refers for residential placement, but these referrals often need a high level of behavioral support that make them a bad fit with those already living in the agency’s group homes, Cabral said.

NESCSO’s consultants have spent months reaching out to service providers and Jacobsen said they still plan to do some site visits.

But Cournoyer urged Jacobsen and other NESCSO representatives do a “deeper dive” into specifics from the family perspective.

Jacobsen was asked what impact NESCSO’s recommendations would have on the system. He said NESCSO was hired to give BHDDH a range of options, from small changes to blowing up the entire system and putting a new one in place. But in the end, the “choice is not mine,” he said. Instead, BHDDH officials have reserved the right to decide which options to pursue - or not.

Whether NESCSO’s recommendations ultimately result in real improvements will depend on the advocacy of the community, he said.

Jacobsen said he spent 20 years working for Medicaid in Rhode Island and no one ever asked him “how to spend more money.” Quite the opposite, he said.

If BHDDH asks for more money, Jacobsen said, someone “beats them over the head.”

BHDDH was not represented during the discussion, which was recorded and posted on the Facebook page of RI FORCE, a family advocacy group. Asked to comment on the recording, the department provided this context:

“BHDDH has invested sizable resources into a rate review process to provide the needed analytics and options to support system transformation. The department is committed to quality, safety and access through its vision of individualized, person centered, self-determined and community-based supports.

We recognize that this vision requires system transformation. While the system has certainly made progress, the underlying reimbursement system remains grounded in past practices. The purpose of this rate review is to assess the costs of services and explore other models for reimbursement. This work must also extend to understanding the system as a whole for consideration of both structural efficiencies and complexities that could hinder or promote transformation. This work is in progress and this is why feedback and input from the community remains vital and welcomed.

While the department has demonstrated its responsiveness through modifications and investments within the current structure, we look forward to the completed analytics and options that NESCSO will deliver to support both near term and long-term changes.”

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.