Judge Hails RI DD Progress But Calls For Critical Fixes

By Gina Macris 

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

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

Judge McConnell File Photo

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

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

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

Antosh - file photo

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

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

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

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

Transition Services Have Achieved Goals

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

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

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

Key Problems Remain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Judge Adds 2 Years to Oversight of RI DD Consent Decree

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

By Gina Macris

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

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

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

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

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

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

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

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

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

A Decade Of Growing Pains

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

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

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

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

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

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

Reforms Accelerate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Implementation Science Guides Monitor

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

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

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

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

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

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

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

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

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

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

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

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

To read the entire court order, click here.

To read the monitor’s commentary, click here.

RI's New DD Services Begin Roll-Out

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

By Gina Macris

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

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

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

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

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

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

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

A Capsule History

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

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

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

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

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

The Role of Advocacy

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

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

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

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

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

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

The Power of the Court

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

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

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

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

The Bureaucracy Matters

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

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

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

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

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

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

Changes Take Shape

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DDD Expands Staff

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

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

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

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

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

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

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

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

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

Next Steps

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

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

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

Three informational sessions remain in July:

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

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

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

Insurmountable Deadline?

By Gina Macris

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

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

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

A. Anthony Antosh

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Find the latest Monitor’s report here

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

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

The HMA-Burns Rate Review Summary

BHDDH Workplans

RIDE Transition Action Plan Status

RIDE Transition Work Plan

BHDDH Communications Plan

Multi-Source Funding For Employment Services

Multi-Source Funding Graphic

Conflict-Free Case Management

Judge Tightens Reins On RI DD Consent Decree Compliance

By Gina Macris

It’s been eight years and eight months since Rhode Island signed an agreement with the U.S. Department of Justice to improve the lives of adults with developmental disabilities by ending their segregation in sheltered workshops and day care centers.

But with 16 months remaining for the state to fully comply with the consent decree, the state’s progress falls far short of the goals, according to the report of an independent court monitor made public Dec. 6.

On that day, U.S. District Court Chief Judge John J. McConnell, Jr. incorporated the monitor’s wide-ranging recommendations into an order outlining some 50 tasks to be completed before June 30, 2024, when the 2014 consent decree expires.

McConnell also scheduled a public hearing on the status of the consent decree for Monday, Dec. 12, at 2 p.m.

Parts of the order will require additional changes to a preliminary review of rates for developmental disability services that was made public in September.

The recommendations of the monitor, A. Anthony Antosh, provide a snapshot of the current system:

1. Forty-four percent of those who once toiled in sheltered workshops, and 33 percent of those who spent daytime hours in centers, have found jobs in the community since the consent decree was signed, far below expected levels.

2. About one third of adults – and more than half of young people moving from high school to adult services – do not participate in community activities. The consent decree promised a 40-hour week filled with work and activities that are purposeful to each of some 4000 persons eligible for services.

 Antosh recommended a way for the state to meet its targets: bring system-wide funding to existing pilot programs that have shown success in employment and integrated community activities – the fruits of some $12 million in “Transformation Grants” made during the past year.

Judge McConnell has given the state until next July to put that funding in place – and to figure out how to fit it into the rate review or find some other way to do it.

The monitor said that “individuals and families report uncertainty and lack of information” about the consent decree, the Employment First policy emphasizing competitive employment for those with disabilities, and community activities.

Families of young people moving from high school to adult services say they generally are “overwhelmed by the process and report not having sufficient information or support,” Antosh said.

The court ordered the state to put a streamlined application for adult services in place and to give every family a consistent point of contact to serve as a guide during the transition. These are two more of the 50 tasks the state must complete in 2023 or 2024 to comply with the consent decree.

Antosh put the state on notice that his final evaluation of the state’s compliance with the consent decree in will include an assessment of its impact on people’s lives. Positive impact will be measured by at least two thirds of a random sample of individuals reporting a “community-based life, achievement of personal goals, and satisfaction” during independent interviews, he said.

In the last few years, Judge McConnell has recognized that a key problem in the implementation of the consent decree has been a lack of front-line staff, who, until mid-2021, were paid an average of $13.18 an hour, too little to attract an adequate workforce.

The General Assembly increased wages from $15.75 to $18 an hour in July, and McConnell has ordered that rate to increase to $20 an hour by 2024.

In recent months, the state has stepped up its recruitment efforts, with 146 new hires reported in September by a recruitment consultant, Antosh said.

McConnell ordered those recruitment efforts to continue, with emphasis on helping individuals and families who direct their own services. The state’s figures indicate this group now makes up about a quarter of all those receiving developmental disability services.

Among other things, the state must explore the possibility of a mechanism to provide health benefits to for those who work on an hourly basis for individual families by July, 2023.

McConnell’s court order also signals that neither he nor Antosh are in agreement with some features of a recent rate review that would update the fee-for-service reimbursement system the state uses to pay private service providers who deliver the actual day-to-day supports to adults with developmental disabilities.

A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said Dec. 1 that “changes have been made to the recommendations” since they were presented to the public in September on the basis of “public comments, including the Court Monitor’s and those from other stakeholders.”

“These final recommendations are now under review and will be made public after review,” the spokesman said.

The rate review recommendations as they now appear on the health policy webpage of the outside consultant, the Burns & Associates Division of Health Management Associates, (here) cover everything from assessment of need to the allocation of individual budgets and billing requirements, in addition to revisions to dozens of rates that would be used to continue a fee-for-service system called Project Sustainability, introduced in 2011.

The Burns & Associates recommendations would continue requiring service providers to bill in 15-minute units from an extensive menu of rates for services provided during the day, despite recommendations from a study group and the monitor that the detailed –and costly - paperwork should be eliminated.

Now, as part of McConnell’s action Dec. 6, the state has been ordered, in bold type for emphasis, to “simplify the billing process” through the rate review by July, 2023.

McConnell’s order also elevates several other recommendations Antosh has made touching on the rate review, directly or indirectly.

For example, the state has made it clear that it plans to continue using a standardized interview called the Supports Intensity Scale (SIS) to determine individual support needs, with the addition of supplemental questions to capture particular behavioral or medical issues.

Antosh noted that while the state may continue to use the SIS, the court has previously directed it to explore alternate assessment methods. “Now might be the time,” he wrote.

He also said there should be a funding mechanism that allows individuals and families to “identify unique needs and costs” that go beyond the results of any standardized interview and supplemental questions. Nor should Individuals have to file appeals to get the additional funding (as is now the case), he said.

Antosh discussed “person-centeredness,” how the bureaucracy should enable individuals, with the support of families and advocates, to become empowered to take charge of their own lives, setting short-term and long-term goals and realizing them through day-to-day supports.

A key to this empowerment is first making a service plan based on individual needs and then matching funding to that plan, with an independent case manager or facilitator guiding the process, Antosh said.

Currently, individual service plans are designed to fit into a funding formula that has about 20 options, based on an assessment of need. BHDDH, which determines both individual need and funding, has not indicated it wants to change the current approach, except to fund employment supports as an add-on to the basic budget.

On a statewide level, the Executive Office of Human Services has devised a draft plan for independent, or “conflict-free” case management for all Rhode Islanders receiving Home and Community Based Services (HCBS) funded by the federal-state Medicaid program, including adults with developmental disabilities.

The draft plan proposes a flat rate for all HCBS case management that is yet to be disclosed. It is not clear that the plan fits the monitor’s vision of conflict-free case management, but it will have to meet the requirements of the court and the consent decree as it applies to adults with developmental disabilities.

Public Access to Hearing, EOHHS Meetings

The remote-access public hearing on the consent decree begins at 2 p.m. Dec 12 before Judge McConnell. The meeting will be hosted on zoom.gov The Meeting ID is 160 1690998, and the Password is 488765. This information is also on the court’s public access page, here, along for instructions on dialing in to the audio only. Please note that due to an apparent typographical error, the date of the hearing on the public access page is incorrect.

Maenwhile, at 3 p.m. Monday, EOHHS will host the first of three public comment meetings on the draft plan for conflict-free case management. Advance registration is required for that session and two other meetings, Dec. 14, and 15, both also at 3 p.m. Registration links and other information about conflict-free case management can be found here

Read the Dec. 6 court order here.

Read the EOHHS draft plan on conflict-free case management here.

$2.5 M Unused For Lack of RI DD Jobs Program

CVS Trainee - File Photo

By Gina Macris

This article was updated Sept. 10.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Job Placements Fall Short

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

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

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

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

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

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

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

Rate Review To Finish Nov. 1

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

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

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

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

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

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

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

Administrative Barriers To Integration

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

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

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

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

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

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

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

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

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

Read the monitor’s August 29 report here.

Read the monitor’s Sept. 1 addendum here.

RI General Assembly Will Handle Court-Related DD Issues DD Issues In Regular Budget Talks

By Gina Macris

The pace of discussions for complying with a court-ordered overhaul of Rhode Island’s developmental disability system is expected to pick up as early as next week, when newly elevated Governor Daniel McKee rolls out his budget proposal for the fiscal year beginning July 1.

McKee was sworn in March 2, replacing Gina Raimondo, who resigned as governor after clearing final hurdles in Washington, DC to become Secretary of Commerce. Raimondo’s office said in mid-January that McKee, then Lt. Governor, would be responsible for submitting the budget proposal to the General Assembly.

It remains unclear to what degree, if at all, the proposed state budget will incorporate additional money for initial steps toward compliance with a federal court order enforcing a 2014 civil rights agreement.

While uncertainty about funding hovers, court-ordered discussions organized by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) have been underway since last August to develop a path forward for providing services that will encourage integration of adults with developmental disabilities in their communities, in accordance with the 2014 consent decree and the Americans With Disabilities Act.

A recent report to Chief Judge John J. McConnell, Jr. of the U. S. District Court indicates short-term recommendations are taking shape to address some of the 16 points the judge laid out in a reform agenda last summer.

He gave the state until June 30 to develop a three-year implementation plan that will achieve full compliance with the consent decree by 2024.

Representatives of the House and Senate leadership participated in some court-ordered reform talks until McConnell issued an order Jan. 6 which said the three-year plan must include these specifics:

• a $20 minimum wage for direct care workers by fiscal 2024.

• Incorporation of the developmental disabilities caseload in the formal process for estimating the state’s public assistance obligations for budget calculations, beginning this year.

On March 3, House Speaker Joseph Shekarchi and Senate President Dominick Ruggerio issued a new statement on how they will handle legislative issues raised by the reform efforts:

“Specific issues will be analyzed and discussed in legislative committees as part of the public hearing process on pending legislation as well as the upcoming state budget.”

The two leaders continued: “The members of the General Assembly care deeply about individuals with developmental disabilities and ensuring a strong continuum of care, and the Senate President and House Speaker believe that we have an obligation as a society to provide strong services and supports for all vulnerable Rhode Islanders.”

The leadership had withdrawn from reform talks out of concern that their representatives’ participation could be perceived as tacit approval of change outside the legislative process, according to separate letters sent to McConnell Feb. 3.

Shekarchi’s and Ruggerio’s statement did not specifically mention the direct care worker wages or making the developmental disabilities numbers part of the twice-yearly Caseload Estimating Conference, the budgeting tool used by the governor and the legislature.

Development of a new approach for determining how to support the individualized plans of the developmentally disabled population is at the heart of the overhaul. The existing fee-for-service system was designed 10 years ago for congregate care, where one or two staff members could oversee as many as ten clients in a day care center or sheltered workshop. The U.S. Department of Justice found that model violated the ADA’s Integration Mandate.

In November, McConnell heard testimony that the current funding ceiling for the private provider system, roughly $268.7 million in federal/state Medicaid money, will not support integrated services, which are much more labor-intensive — and thus, more costly — than congregate care. The cost of correcting the non-compliance could increase the developmental disabilities budget by nearly 50 percent, according to one estimate.

Because of the uncertainty over funding, five workgroups organized by BHDDH are focusing on short-term changes that can ease administrative burdens on providers and make the state bureaucracy more user-friendly for the individuals served and their families, according to a progress report submitted to McConnell at the end of February.

According to the report, BHDDH expects to have detailed information by March 31 on:

• shifting from quarterly to annual per-person budget authorizations

• streamlining dozens of private provider billing codes, many of which require documentation of staff time in 15-minute increments for each client served

• simplifying the process of writing each client’s annual service plan “to reduce repeated questions, frustrations, and errors requiring correction and intervention.”

The report recommends adding a second assessment or new questions or criteria to improve the accuracy of the standardized Supports Intensity Scale-A, (SIS-A) interview, used to determine service needs and funding levels.

Improved assessments would reduce reliance on appeals. Interviewers also need training on cultural differences, it said.

Additional recommendations include:

• a training program for parents on how to approach the SIS-A, which has been the subject of frequent complaints over the years from parents

• clarification of the process for appealing funding determinations made as a result of the SIS-A, and developing ways to more quickly resolve appeals

• consolidation of separate applications for Medicaid and for Medicaid-funded services into one process

• a request for a waiver from the Centers for Medicare and Medicaid Services for Medicaid eligibility redeterminations for persons with developmental disabilities, who have life-long conditions.

The report said long-term revision of the fiscal and reimbursement system will be implemented by December, 2022.

The workgroups developing the recommendations include both state officials and representatives of the community, including individuals who themselves receive services, families, advocates, and service providers.

The groups’ recommendations are reviewed by the appropriate department-level directors and other key officials, according to the report.

Once final recommendations are analyzed and decisions made by the state, a “cohesive workplan” that will be submitted to McConnell on or before June 30 as required by an order the judge issued last July 30, the report said.

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.

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.”

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

A. Anthony Antosh

By Gina Macris

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

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

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

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

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

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

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

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

DD Council Weighs In

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

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

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

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

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

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

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

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

“Health Home” Merits Debated

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

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

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

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

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

Tom Kane, Left, With Antosh

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

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

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

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

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

• Concerns about a lack of housing options

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

A Call For A More Stable Funding Cycle

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

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

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

Kane provided some history on the quarterly allocations:

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

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

Mental Health Services Lag

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

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

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

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

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

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

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

Critic Says Assessment Method Is “Demeaning”

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

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

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

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

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

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

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

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

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

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

RI DD Services Get A "Status Quo" Budget, But Can It Keep Up With Client Needs And Consent Decree?

By Gina Macris

With Rhode Island Governor Gina Raimondo signing the $9.6 billion budget bill into law June 22, the service system for adults with developmental disabilities averts a crisis in the fiscal year beginning July 1, and instead continues the status quo.

That is to say, the system is still struggling to meet the needs of some 4,000 Rhode Island adults with developmental disabilities, including those who are seeking services for the first time.

Higher-than-expected revenue estimates in May enabled the House and the Senate to restore a number of reductions in the human services which Raimondo had proposed in January, including about $18 million in developmental disabilities.  On June 20, the Senate ratified the House version of the budget and sent it to the governor.

Until the state’s intent to restore the funds for developmental disability services became clear in mid-May, an independent federal court monitor had been preparing to make recommendations to U.S. District Court Judge John J. McConnell, Jr. for an order to ensure adequate funding..

It was the second time since a federal civil rights consent decree was signed in 2014 that a court order, or the threat of one, has surfaced during the budget-making season at the State House. There’s no reason to believe that the monitor won’t re-visit that idea next year if funding for developmental disability services fails to keep pace with the stepped-up demands of the consent decree, which requires the state to shift from segregated services to those offering integrated, community-based opportunities by 2024.

One goal illustrates the challenges. The state is to have part-time jobs by Sept. 30 for all young adults who left high school between 2013 and 2016 and who who want to work, but with three months remaining until the deadline, those with jobs number 235, or 55 percent, of a population of 425, according to figures released last week.

The budget does include $1.5 million in technical assistance for private providers of developmental disability services trying to adjust to integrated services for clients, according to Carmela Corte, the chief financial officer of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). Those are federal-state Medicaid dollars that will be taken from the allocation for direct services.   

A relatively small number of adults with developmental disabilities who choose to use their funding authorizations from BHDDH for in-home care will be able to pay workers 10 percent more, which amounts to about $620,000 in the budget, Corte said.

By The Numbers 

The General Assembly also adjusted the current budget to close out the fiscal year, adding about $15.6 million to cover an operating deficit as recommended by Raimondo, who acknowledged the shortfall deficit as a one-time event.

The overall numbers in developmental disabilities:

•     $272.1 million for Fiscal 2018, which ends June 30    
• ·   $271.4 million for Fiscal 2019, which begins July 1

Administrators, however, tend to work on a day-to-day basis with an “operating budget,” which includes only federal and state Medicaid funds available for providing direct services.

For the current fiscal year, federal-state Medicaid dollars are budgeted at $269.8 million.  For the fiscal year beginning July 1, the federal-state Medicaid total is $269.2 million.

No Raises For Frontline Workers

One big-ticket item missing from the next budget is a pay increase for employees of private service providers who work directly with adults with developmental disabilities.  The underpaid workforce is sure to be a major issue for advocates when the General Assembly reconvenes in January.

Incremental raises for these workers during three budget cycles have allowed them to keep just ahead of the minimum wage, in a range which puts private service providers in competition with the same pool of workers as fast-food restaurants and other retail businesses. 

Including the most recent raises, in 2017, the average direct care worker is paid about $11.50 an hour. The minimum wage, which increased from $9.60 to $10.10 on Jan. 1, is due for another bump, to $10.50, on Jan. 1, 2019.

Before the General Assembly cut $26 million from the developmental disabilities budget in 2011, the average pay at some private agencies serving adults with developmental disabilities averaged close to $15 an hour, with comprehensive health insurance and other benefits.  Career ladders afforded front-line workers opportunities for advancement.

Since then, the workforce has become unstable, with employers unable to fill one out of six jobs, according to the Community Provider Network of Rhode Island, a trade organization. Turnover ranges from about 30 percent to about 75 percent, depending on the agency. In some cases, workers leave direct care work for other jobs with similar pay but much less responsibility. In other cases, they leave for the same type of work at better pay in Massachusetts, which is scheduled to offer a minimum of $15 an hour for such work July 1.

Budget Questions At Public Forum

The issue of worker pay surfaced at a public forum hosted by the Division of Developmental Disabilities (DDD) June 18 at the University of Rhode Island, with one parent lamenting the lack raises in the year ahead.

Kerri Zanchi                         Photo By Anne Peters

Kerri Zanchi, Director of Developmental Disabilities, and other staff of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), explained various aspects of the budget and outlined initiatives intended to help the service system in the long run.

Asked whether the “status quo” funding approved by the General Assembly would result in cost overruns in the coming fiscal year, Zanchi didn’t say.  Instead she emphasized that DDD must use its data “every single month” to support its projections and “really understand what our needs are going to look like.”  

But BHDDH projections of need for developmental disability services don’t figure in the semi-annual Caseload Estimating Conference that comes up with figures for Medicaid entitlement costs.

And the state Budget Office does not take actual costs into account in making recommendations to the governor, a spokeswoman said earlier this year.  Rather it uses “estimated growth rates in the cost of providing services,” according to Brenna McCabe. She did not say who makes the estimates or otherwise elaborate.

The new budget doesn’t allow for increases in individual funding authorizations – one of the chief causes of the cost overruns which prompted the BHDDH request for additional funding in the budget cycle now winding down.

The governor cited higher “acuity” in acknowledging that increased per-person costs fueled a projected $15 million deficit in developmental disability costs in the fiscal year ending June 30. That factor, however, was ignored in her presentation of Fiscal 2019 budget that begins July 1.

Ever since November, 2016, there has been an upward trend in individual authorizations, something  that is expected to continue for several years, until all clients have been evaluated at least once using a revised standardized interview that is considered more accurate than the previous one. Both the original interview, called the Supports Intensity Scale (SIS), and the revised one, called the SIS-A, were developed by the American Association on Intellectual and Developmental Disabilities.  

Budget Language Opens Door To Innovation

The budget contains language that responds in to a variety of concerns about who manages resources available to adults with developmental disabilities and how providers are paid. 

It gives BHDDH the required state legislative authority to apply for a so-called “Health Home” and an “Alternate Payment Method” to create pilot programs for changes in case management and provider reimbursement better suited to integrated, community-based services that are tailored to individual preferences and needs, as required by the Americans With Disabilities Act.

The Centers for Medicare and Medicaid Services (CMS) hold that neither the states, as funding authorities, nor the services providers themselves can also be responsible for designing and managing individualized programs of activities without conflicts of interests.

States should have another disinterested party in the role of case manager, according to CMS.

The Health Home is the CMS name for the third-party case management organization that would oversee individual clients’ Medicaid and Medicare services, while the Alternate Payment Method allows states to explore changes to the usual fee-for-service reimbursement to private providers.

 Zanchi and Kimberly Reynolds, BHDDH administrator of financial management, explained the goals of the applications at the public forum June 18.

Reynolds described the Health Home as a “one-stop shop where individuals and families may get assistance in managing their services.  BHDDH has three health homes, mostly in the substance abuse and mental health areas.”

By way of background, Zanchi said that the idea for applying for a Health Home grew out of collective thinking in DDD during the last year about ways to put its clients in the driver’s seat in shaping their activities, or as she put it, developing “person-centered practice.”

For one thing, the system can’t be truly “person-centered” without case management that is free of conflicts of interest, Zanchi said.

She also said a pilot program for an Alternate Payment Method might generate solutions to problems faced by the current fee-for-service reimbursement system, which poses challenges to providers trying to get their clients into the community in meaningful ways.

The fee-for service system requires providers to bill in 15-minute increments, but only when a client is actually receiving services. It doesn’t allow providers to plan ahead, because reimbursement depends on day-to-day attendance at a particular activity, without exceptions for occasions such as client’s medical appointments, illnesses, or vacations.

As the state moves to a system with greater consumer control and consumer empowerment, Zanchi said, providers will need to be able to count on more staff to get their clients into the community.

Despite the consent decree, the reimbursement system is still geared to funding programs held in facilities like sheltered workshops and day centers, where one staff member can keep an eye on larger groups of individuals than is possible in the community.

Zanchi and Reynolds each said they want the public to participate in drawing up the applications for the Health Home and Alternate Payment Method.

“We have a lot of work to do in a very quick time frame, and like everything else we’ve done, we’re going to do it with our constituents,”  Zanchi said.

The state anticipates submitting the applications, receiving decisions, and beginning pilot programs by next Jan. 1, according to Zanchi. CMS would pay 90 cents on the dollar to support the pilot programs for a maximum of two years.

Flyers distributed at the meeting gave a schedule for public meetings on the applications, but the schedule was put on hold. Reynolds said she is the contact person for the Health Home. She can be reached at 401-462-3941 or at Kimberly.Reynolds@bhddh.ri.gov 

RI DD Advocates Warn Of 'Massive Retrenchment' From Proposed $21.4 Million Spending Reduction

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

Donna Martin, executive director of the Community Provider Network of Rhode Island,  speaks during the Day Of Action, sponsored by the provider network. Standing, l to r, are Rep. Deborah Ruggiero, (D-Jamestown and Middletown); Rep. Dennis M. Canario, (D-Portsmouth, Little Compton and Tiverton), and Rep. Teresa A. Tanzi, (D-Narragansett and South Kingstown.  Seated on the steps below the State House Rotunda are advocates representing the service provider Spurwink RI. 

By Gina Macris

Rhode Island would see a “massive retrenchment” in services for adults with developmental disabilities if Governor Gina Raimondo’s proposed budget is enacted for the next fiscal year, a spokeswoman for providers told members of the House Finance Committee at a hearing March 29.

Pam Goes 

In human terms, Raimondo’s plan to cut $21.4 million from current spending levels would diminish the quality of life for some 4,000 individuals whose care is already undercut by low wages and high turnover among caregivers, said Pam Goes of Warwick, who has two sons with developmental disabilities, including one who cannot express his needs verbally. 

Goes delivered the same message at a “Day of Action” in commemoration of March as Developmental Disability Awareness Month under the State House Rotunda in mid-afternoon as scores of adults with disabilities and their supporters lined the steps leading to the House and Senate.  

State Sen. Louis DiPalma, D-Middletown, told the crowd that “people with developmental disabilities have the ability to lead a full and prosperous life. That’s why I’m here.'

Rep. Teresa Tanzi, D-Narraganset and South Kingstown, said that for the compassionate work they do, the wages of direct care workers are an “injustice.”

Tanzi, who chairs the Human Services Subcommitte of the House Finance Committee, presided over the budget hearing later in the afternoon.

Of the overall $21.4 million reduction from current spending levels in the next fiscal year, $18.4 million would come from private the agencies that provide most of the services and $3 million would be taken from a state-operated system of group homes.

Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), did not mince words when she addressed Tanzi and other members of the House Finance Subcommittee.

She said “there is no way” that service providers will be able continue efforts to comply with new federal Medicaid regulations requiring integrated, community-based services and a 2014 federal consent decree that focuses on competitive employment for adults with developmental disabilities.

Needed Changes Are "Not Going To Happen" 

Compliance with the 2014 consent decree and the new Medicaid regulations, called the Home and Community Based Final Rule, depends on system-wide changes in the manner of care, and “that’s not going to happen” with an $18 million cut to private service providers, Martin said.

Instead, there will be a “tremendous reduction” in services, she said, with agencies forced to prioritize the health and safety individuals in their care. Employment –related services and the services necessary to provide community integration will suffer if the agencies must absorb an $18 million, Martin said. Workers’ hours and wages – which hover slightly above minimum wage – would be cut.

David Reiss, CEO of the Fogarty Center, the largest non-profit service provider in the state, said the agency simply cannot survive if the state imposes the $18.4 million reduction across the board. It represents about a 7 percent cut in spending. 

Reiss said he has closed five group homes in the past year, not because of a lack of demand but because he couldn’t find enough workers to staff them. Staff turnover is about 40 percent, he said. 

The starting wage at the Fogarty Center is $10.50 an hour, he said. Although the General Assembly has raised the pay for direct care workers slightly in the past two years, the minimum wage also has increased. It is now $10.10 and is scheduled to go up again next January to $10.50 an hour. Massachusetts has an $11.00 minimum wage and has agreed to pay direct care workers a minimum of $15 an hour beginning in July.

Raimondo’s budget includes no money for raising the wages of direct care workers this year, although a bill in the legislature would link increases in the minimum wage to raises for front-line staff, according to Martin, the CPNRI director.

High Staff Turnover Worries Parents

Pam Goes, the Warwick mother, discussed the impact of the high staff turnover on her non-verbal son.

“We feel like we are constantly starting over,” she said. Her son Paul needs to trust his caregiver, and that trust comes only with time and continuity of high quality care.

“It’s a difficult job for them to be on top of his moods ,” she said. “You need to get to know him,” she said. Paul will often test new staff to see how much he can get away with, she said, and he can become aggressive.

“I worry that there are so many people in and out of his life,” she said. “I worry that his communication is so limited. I especially worry about what happens when I’m gone,” she said.

“I want to advocate for a sustainable system where people live a good life,” she said. “It’s a lot of stress knowing the situation could become more untenable.”

About four thousand people receive services, she said, and “every family has a story like mine.”

Tom Kane, the CEO of AccessPoint Rhode Island, said Goes reminded him of the best compliment his agency ever received: “The work you did for our son allowed us to be the family we wanted to be."

A Call For More Funding

The budget is “about priorities. It’s about morality, and it’s about people” he said. “It should be about people.”

Kane called on the legislators to approve a proposed $15.3 million budget increase to cover cost overruns in the current fiscal year, as Raimondo has proposed, and then to add another $15 million in the budget cycle beginning July 1 to deal with a structural deficit and allow some growth.

Raimondo’s budget proposal does not acknowledge the structural deficit, he said. Instead her plan only temporarily grants additional funding, only to take it away in the next fiscal year.

The General Assembly approved total spending of $256.9 million for the current fiscal year. Raiimondo’s proposal would increase that figure to to $272.2 million. But in the fiscal year beginning July 1, her bottom line would drop to  $250.8 million. That figure is  $6.1 million less than the enacted budget and $21.4 million less than the temporary budget expansion Raimondo has proposed through June 30.

Kane presented figures which showed Rhode Island spends significantly less on adults with developmental disabilities than neighboring Massachusetts and Rhode Island.

The State of the States in Developmental Disabilities, a research project sponsored by the University of Colorado, tracks residential costs for adults with intellectual challenges. In 2015, the latest year for which data is available, the national average for residents of institutions with 16 or more beds was $256, 400 per person.

• Massachusetts spent $287,434 per person
• Connecticut spent $403,496
• Rhode Island spent nothing in that category. All those who would be in institutions in Massachusetts or Connecticut live in group homes in Rhode Island, Kane pointed out.

The average cost for group homes with six or fewer residents nationwide was $129,233 in 2015, according to the State of the States.

• Massachusetts spent $170,682 per person
• Connecticut spent $172,067 per person
• Rhode Island spent $114,973 per person                                       

Kane said the average per-person cost in Rhode Island is skewed upward by the state-operated system of group homes. According to the House Fiscal Office, the average per-capita cost for 139 residents of the state operated system is $207,251.

In the privately-operated group homes, however, the state spends about $60,000 a year per person, Kane said. Roughly 1200 individuals live in houses run by private agencies like Access Point RI  and the Fogarty Center.

Controversy Continues over Assessment

Kane turned to a discussion of the Supports Intensity Scale, a controversial assessment methodology that uses lengthy interviews to determine the level of services needed by persons with developmental disabilities on a case-by-case basis. It was introduced in 2011, ostensibly to correct “special considerations” for individual clients that state officials said posed a problem because they were driving up costs, Kane said. 

Ironically, he said, the assessment has prompted many more appeals of individual funding than the number of “special considerations” that had been granted previously.

Some people see the assessment as a problem since it was revised in November, 2016, because it has it has led to larger awards, Kane said.  A House fiscal analysis says the new assessment has added $17 million to developmental disability costs in the first 12 months it was used. 

Kane said service providers believe that the results of the original assessment were “manipulated to back into a budget that didn’t accurately reflect the needs of people.”  

The revised assessment, the Supports Intensity Scale – A, is being used “far more appropriately now,” he said.

The House Fiscal Advisor, Linda Haley, noted a “moratorium” in the use of the SIS-A. The director of the agency responsible for developmental disabilities, Rebecca Boss, explained that it was temporary, to allow officials to review their implementation of the revised assessment. 

A total of 46 errors in funding were corrected (see related article) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals continues to use the assessment for new entrants and for regularly-scheduled re-evaluations of clients. Boss said.

If an appeal includes documentation of changes in a person’s medical or behavioral needs that are likely to be long term, perhaps as part of the aging process, a client will receive a re-assessment with the SIS-A ahead of schedule, added Kerri Zanchi, Director of the Division of Developmental Disabilities.

Kevin Nerney, a spokesman for the Rhode Island Developmental Disabilities Council, discussed several initiatives that are intended to both improve services in compliance with federal law and cut costs over the long term.

But Rhode Island is not there yet, he said.

“We don’t want to destroy one system (of services) before creating a new one,” Nerney said. “We don’t want to leave people behind based on an arbitrary fiscal goal rather than the needs of people.”

He said he knows that some eligible individuals are unable to find services that fit their needs, alluding to an increase in the number of individuals who are receiving only case management  during the last couple of years. That figure jumped from 451 in 2016 to 643 this year.

“On paper, it may look like savings” for the state, Nerney said, but some of those families “are in crisis.”

'Day Of Action' Planned At RI State House To Raise Disability Awareness - And Alarms About Budget

By Gina Macris

Developmental Disabilities Awareness Month, celebrated across the nation, will come to the Rhode Island State House in a “Day of Action” Thursday, March 29.

Adults who face intellectual challenges in daily living plan to celebrate their accomplishments. But they and their supporters also want to raise an alarm about the damage they say proposed budget cuts will cause to the services they need to live full lives.

The “Day of Action” is aimed at lobbying legislators over what advocates say is a looming crisis. Late in the afternoon, after the House adjourns, a subcommittee of the House Finance Committee is scheduled to hear Governor Gina Raimondo’s budget proposal.

The budget would eliminate $18.4 million in current costs from the private service system that supports most adults with developmental disabilities in Rhode Island, says Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), sponsor of the “Day of Action. “

On Thursday evening, Advocates in Action will host a meeting in Warwick that will feature adults with developmental disabilities encouraging their peers to speak up for their right to individualized services that is embedded in the Americans With Disabilities Act (ADA).  (Read related article here.) 

The individualized  approach is inherently costlier than the congregate care Rhode Island has depended on in the past in sheltered workshops and day centers. 

But the right to individual choice is mandated by the state’s 2014 Olmstead consent decree with the U.S. Department of Justice. And the judge in the case, John J. McConnell, Jr. of U.S. District Court, has signaled from the bench that he will be watching budget deliberations.

Among service providers, some officials say privately that their agencies are teetering on the brink of insolvency as a result of several years of underfunding in which the state has failed to cover their costs and they’ve exhausted any reserves they might have had.

The budget, if enacted, would be “untenable,” said the CEO of one service agency, who asked not to be identified publicly.

Family members say the issue is not just about the service agencies.

David and Marcia Graves, parents of a woman with cerebral palsy, said in a statement that the spending cuts “will put the emotional and physical well-being of our daughter and others in jeopardy.”

A drastically reduced budget would make the difficult job of recruiting and retaining qualified direct care workers impossible, the Graveses said in a statement released by the CPNRI.

Raimondo’s calculations suggest that the governor’s office and the developmental disabilities agency, BHDDH, are not reading from the same page of figures.

Martin, the executive director of CPNRI, put it another way. She said that Raimondo’s budget, like the proposals of governors before her, does not address a structural deficit in developmental disabilities, instead continuing a cycle of chronic underfunding and deficit spending.

Here are the numbers:   

The developmental disabilities budget the General Assembly enacted last summer for the current fiscal year allows $256.9 million in spending.

 Raimondo would raise current spending to $272.2 million – an increase of $15.3 million to cover a cost overrun. 

For the fiscal year beginning July 1, Raimondo would drop the bottom line to $250.8 million. The difference would be $21.4 million, including $18.4 million that would come from private providers and $3 million that would come from state-operated group homes.

Viewed another way, Raimondo’s bottom line of $250.8 million is $6.1 million less than the currently authorized spending level of $256.9 million.

All the money comes from the federal-state Medicaid program, with the federal government providing a little more than 50 cents on the dollar.

Budget officials who briefed reporters on Governor Raimondo’s overall fiscal proposal in January emphasized her efforts to close a projected $200 million deficit in the next fiscal year while promising that Medicaid recipients, including those with developmental disabilities, will not see a reduction in services. 

The Office of Management and Budget (OMB), which advises the governor, was asked how it approached BHDDH spending as it set a target for the next fiscal year.

OMB “makes adjustments based on estimated growth rates in the cost of providing services,” said a spokeswoman, but she acknowledged that those estimates did not take into account the current, actual costs.

The spokeswoman said that OMB worked from the $256.8 million budget enacted last year for the existing budget cycle and incorporated “personnel and entitlement adjustments,” like a slight increase in the federal reimbursement rate for state Medicaid expenditures, as well as “certain trend growth rates.”

From there, OMB applied a 10 percent reduction, as it has across the board for all state agencies, to deal with the state’s overall projected $200 million deficit, she said. (Raimondo still found money for new programs.)

One hurdle faced by BHDDH in presenting its case for funding that it is not represented at a twice-yearly meeting at which officials grapple with trends in Medicaid spending, even though the department's services are entirely funded by the federal-state program. 

In November and May, the State Budget Director meets with the fiscal advisers of the House and Senate in the caseload estimating conference to reach consensus on the latest Medicaid expenses and provide updated information for budget projections. 

The law setting up the caseload estimating confernce excludes both BHDDH and the Department of Children, Youth, and Families (DCYF), another agency funded by Medicaid. Companion bills pending in the House and Senate would require both BHDDH and DCYF to participate. 

The most recent caseload estimating conference was in early November, about three weeks after BHDDH submitted its budget to OMB. 

At the time, BHDDH had about a year’s experience with a revised assessment method that determines the individualized level of service authorized for adults with developmental disabilities. The result was an added $17 million in developmental disability costs, according to a report of the House fiscal staff.

Raimondo’s budget summary suggests that BHDDH has been reviewing the validity of the assessment. But BHDDH director Rebecca Boss said in an interview in January that “it’s probably a misnomer to call it a validation of the SIS-A.” She referred to the acronym for the assessment, called the Supports Intensity Scale –A.

The American Association on Intellectual and Developmental Disabilities, the developer of the instrument, “have a scientifically rigorous study that this is a valid tool,” Boss said.

“For us, it was validation of our implementation of the SIS-A, not necessarily the tool itself. It’s a validation of our implementation, and that’s probably a better way to say it,” she said.

BHDDH found 46 cases in which the assessment resulted in individual authorizations that were higher than warranted. Boss said those authorizations were corrected, and all the social workers who do the assessments were retrained in how and when to ask supplemental questions that might lead to higher funding.

“We’re not planning to discontinue using the SIS-A,” she said. “We are planning to make sure we are using it correctly.”

In other words, the prime driver of higher per-person costs for developmental disability services is not going away.

And it will take several years before all adults with developmental disabilities  - some 3700 receiving services - have all been assessed using the new SIS-A.

From 2011 until November, 2016, BHDDH had been using the predecessor to the SIS-A, which was enmeshed in controversy, with accusations by families and providers that assessors humiliated them and the state manipulated results to artificially depress funding authorizations. 

Successful appeals of individual funding allocations cost the state more and more money until the supplemental payments reached a total of about $23 million in the last fiscal year.

The U.S. Department of Justice has criticized the way the state used the original SIS in findings that led to the 2014 consent decree. Two years later, in May, 2016,  the SIS figured in a multi-faceted compliance order issued by Judge McConnell.

He said state policy must require all assessments to be conducted “in a manner that is consistent with individuals’ support needs, separate and apart from resource allocations.”

Six months later, the state inaugurated the SIS-A. Martin, the CPNRI director, said her membership tells her the SIS-A still poses some challenges to families, but it is far more accurate than the previous version. 

RI Consent Decree Task Force Details Concerns About DD Services In Report To Federal Monitor

By Gina Macris

Many young adults with developmental disabilities in Rhode Island are still not receiving services to which they are entitled in a timely manner. Some are not getting services at all.

These conclusions have emerged as the consensus of the Employment First Task Force (EFTF) concerning Rhode Islanders with intellectual and developmental challenges who are trying to get regular jobs and other integrated services promised by a federal consent decree signed nearly four years ago.

The EFTF grew out of a provision of the 2014 federal consent decree which called for a bridge between the public and state government.  An independent court monitor on the case has made it clear that he expects the EFTF to provide a reality check from the community as the state tries to desegregate its services for adults with developmental disabilities to comply with the Americans With Disabilities Act.

The Task Force, including developmental disability professionals in the private sector, family members and consumers themselves, summarized its observations and recommendations covering the last half of 2017 in a recent progress report to the court monitor, Charles Moseley.

In 2016, under pressure from Moseley, the U.S. Department of Justice, and U.S. District Court Judge John J. McConnell, Jr., the state cleared a backlog of as many as 250 applications for adult services and developed an “eligibility by 17” policy.

The policy is intended to allow families plenty of time to plan a smooth transition for their sons and daughters to move from high school to the adult world. Most special education students eligible for adult services from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) stay in school until the age of 21.

Nearly a year after the “eligibility by 17” policy was announced, in July, 2017, EFTF members were still hearing comments relayed by special education professionals that some families of students were notified of their eligibility but weren’t told how much money they would be allocated in time to plan individualized and meaningful services.

In response to follow-up questions from Developmental Disability News, a BHDDH spokeswoman said in an email August 3 that the agency, working with the Rhode Island Department of Education, local school districts and the Rhode Island Parent Information Network,  is “able to adhere to (the state’s) ‘eligibility by 17 policy.’ ”

"Logjam Cited In Onset Of Adult Services

 But five days later, Claire Rosenbaum, an EFTF member who works as the adult services coordinator at the Sherlock Center on Disabilities at Rhode Island College, said at a public forum that “there seems to be a logjam” when families are trying to figure out how much money the state has awarded them and what it will buy.

At the time, Kerri Zanchi, director of the Division of Developmental Disabilities, (DDD) said her division aimed to give families a one year to plan before their son or daughter leaves left high school and needs needed adult services.

But Rosenbaum said a year is not long enough. Families may explore their options and settle on a particular agency, only to be told it cannot accept a new client with a particular disability or disabilities, she said.

That scenario is not uncommon. A precarious fiscal landscape has prompted many providers of developmental disability services to limit the number of new clients. 

Often, families turned down by one or more agencies  decide that the only way they can get a customized, high quality program is to organize it themselves and pay individual workers through a designated fiscal agent that handles the budget. Once that decision has been made, the families must begin planning all over again, Rosenbaum said, reiterating her conclusion that a year is not enough.

In December, DDD provided data about "eligibility by 17" that EFTF had requested six months earlier, including:

•  The number of applications and the ages of applicants
•  The number found eligible and the time span between application and eligibility determination
•  The number of newly eligible persons who received an initial needs assessment and the time span between the eligibility determination and the assessment interview
• The number who began receiving adult services and the time span from the completion of the needs assessment

In its report, EFTF said that DDD is “actively charting when and why gaps in the process appear.” 

The “gaps in the process” are not defined in the report. But it said Task Force members and state officials agreed to meet regularly to “determine what issues, if any, exist in this process and how to address these issues.”

Data released by BHDDH in quarterly public forums in November and February shed light on some of the requests that had been made by EFTF; the number of applications, the ages of the applicants, and a breakdown on the proportion found eligible. 

The “eligibility by 17” policy assumes that 16 and 17-year olds are submitting applications to BHDDH for adult services, but the most recent data indicates that the 16 and 17year-old age group accounted for only 11 percent of applications between August, 2016 and February 10, 2018. The lack of applications from younger students suggests that the “eligibility by 17” policy hasn’t been thoroughly communicated to families. (See chart below.) 

At the same time, one table indicates that the proportion of applications from 16 and 17 year-olds has been increasing in the last year.

At the most recent public forum, BHDDH officials also presented information on the proportion of applicants that have been found eligible for services. Of 635 applications received between August, 2016 and Feb. 16, 2018, a total of 595 have been decided, including 264, or 44 percent, that were approved without any additional documentation.

The data indicated that an additional 158, or 27 percent, eventually would be approved once documentation was completed.  

Other Issues Raised By Task Force

The Task Force also expressed concerns about other issues. They include:

• A lengthy needs assessment done for each person eligible for services
• The ramifications of a push for more individualized, or “person-centered” services and the planning that goes into them
• An overall approach, dubbed “conflict-free,” in which planning, funding, and service delivery are handled by separate entities so that the best interests of individuals with developmental disabilities are not compromised. Currently, BHDDH handles funding and assessment and approves individual service plans developed by private agencies or independent developmental disability professionals.

Assessing Individual Needs  

 In November, 2016, the state implemented a revised needs assessment, called the SIS-A  (Supports Intensity Scale - A). The SIS-A had been promoted as more accurate than the previous version, and the Task Force concurred.

“Reports seem to indicate better results,” the report said.

At the same time, the Task Force found “ongoing challenges.”

For example, the Task Force said the SIS-A, developed by the American Association on Intellectual and Developmental Disabilities, was “not intended to be a funding mechanism.” That’s the purpose for which it is used in Rhode Island and many other states.

The Task Force recommended that an independent third party be chosen to provide “better interviews” and eliminate conflicts with funding decisions.

Highly detailed interviews with persons eligible for developmental disability services and their families are at the heart of the SIS-A assessment process. Both the assessment and the individual funding decisions are in the hands of BHDDH.

During the interviews, families are very reluctant to speak in great detail about the “deficits and struggles” of the individual at the center of the assessment process, but they don’t understand that this hesitance may result in lower funding for their loved one, the Task Force said.

“Families don’t understand that the first ten minutes of questions which capture exceptional medical and behavioral issues dictate a substantial difference in funding,” the report said.

The Task Force recommended that community organizations, like Advocates In Action, the Cross Disability Coalition, The Rhode Island Public Information Network, and a new parent advocacy group called  RI-FORCE, offer training to their constituencies on the interview process of the SIS-A.

A Call for True Conflict–Free Planning

The report tackled the challenges of so-called person-centered planning, in which the needs and preferences of an individual drive short-range and long-range career and life goals, regardless of the immediate limitations of program offerings of a particular agency.

 In person-centered planning, these individual needs and preferences also drive budgetary decisions, although it is generally understood that not all the supports needed by a person with developmental disabilities will be provided by paid staff.  

“It is our opinion that implementing real, conflict free person-centered planning could have a greater positive effect on people’s lives than the consent decree itself,” the Task Force wrote.

“While there has been some recent movement on the issue,” according to the report,  Rhode Island has been out of compliance for four years with Medicaid regulations for conflict-free individualized planning and management of services.

The Task Force said individuals with developmental disabilities, their families, and service providers all have shown resistance to the person-centered planning initiative now underway.

Some consumers and their families “view this as an additional layer of bureaucracy, while others would prefer all their dollars go to services rather than planning. Some family members are concerned that they would not be as involved using this process,” the report said.

Service providers, who are paid for planning individualized client programs, fear that they will not be able to meet the individualized needs of clients, particularly with limited funds, high staff turnover, and limited transportation options, according to the report.

There is a concern that “conflict-free” removes the staff who best know the individual from the planning process, the Task Force said.

It also expressed concern that there are no additional funds to provide conflict-free planning, saying that redistributing existing planning funds that now go to private providers “may destabilize already underfunded services.”

While calling for additional funding for person-centered planning, the Task Force also urged a continuation of a series of workshops on “person-centered” thinking and planning that is offered by the Sherlock Center on Disabilities at Rhode Island College to promote better communication on the topic. 

Some of the perceptions about person-centered planning “are based on misunderstandings and the general fear that comes with any change,” according to the report. “Communication on this issue will be extremely important.”

BHDDH is trying to address the issue of funding, both to achieve conflict-free planning and case management and to balance its budget in the next fiscal year.

Governor Gina Raimondo’s budget proposal seeks the General Assembly’s approval to amend the Medicaid State Plan so BHDDH can apply for a Health Home waiver that would provide a 90 percent reimbursement rate for person-centered planning and other specific services for two years. 

The earliest such a Health Home might begin operation, on a pilot basis, would be in January, 2019,  and that might be optimistic, according to Rebecca Boss, the BHDDH director.

Supported Employment At Issue

The Task Force, meanwhile, expressed concern about the overall effectiveness of a pilot program in supported employment that is intended to focus on the individual.

“Task Force members expressed concerns regarding the ‘person-centeredness’ of the program, the training requirements to participate, communications regarding the program, and overall effectiveness,” the report said.

Existing staff-to-client ratios prohibit individualizing job seekers’ daily and weekly schedules, according to the Task Force, although that comment did not refer specifically to the pilot program.  DDD also offers job-related services outside the demonstration program.

The Task Force recommended some of its members meet with state officials regularly to review data and develop strategies to ensure the success of the Person-Centered Supported Employment Performance Program.

RI Rate Cuts To DD Providers Or Wait Lists For Services Loom Without More Funding For BHDDH

By Gina Macris   

Rhode Islanders with developmental disabilities would face “drastic measures” such as waitlists for services or reductions in the amounts the state pays private organizations providing these supports if their funding agency must resolve a sizeable budget deficit by the end of the fiscal year June 30.

Rebecca Boss                       Photo By Anne Peters

Rebecca Boss, director of the agency, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), reached that conclusion in a Nov. 30  letter to the director of the state budget office and the finance committee chairmen of the House and Senate.

She pledged to keep working  “to minimize the anticipated disruptions and destabilization that would result from such measures on our vulnerable populations.”  In the last several years, the General Assembly has covered BHDDH deficits with supplemental funding.

The letter outlined a corrective action plan for reducing the deficit, an estimated $15.9 million in in state spending, including about $12 million from developmental disabilities programs and nearly $4 million from the Eleanor Slater Hospital. Without a state match, roughly the same amount in federal Medicaid dollars also would evaporate.

The corrective action plan described a variety of cost-cutting initiatives that at best, would address less than half the overall shortfall, but Boss’s letter did not add up the total savings. BHDDH officials were not able to respond immediately to several detailed questions about the corrective action plan. 

Corrective action plans are required whenever a state agency runs a deficit. But the BHDDH plan raises questions about its future ability to comply with a 2014 federal consent decree that requires Rhode Island to integrate adults with developmental disabilities in the community to comply with the Americans With Disabilities Act (ADA).

Integrated services, which require small staff-to-client ratios, are inherently more costly than the segregated, facility-based programming Rhode Island has used in the past, in which one person can keep an eye on larger groups of people gathered in one room.  An over-reliance on sheltered workshops and day centers put Rhode Island in violation of the ADA's integration mandate, which is spelled out in the Olmstead decision of the U.S. Supreme Court, according to findings of the U.S.Department of Justice.

Rhode Island has never been in complete compliance with the incremental integration goals of the consent decree and in the spring of 2016 came close to being held in contempt of court over lack of funding, among other issues. Since then, as long as the state has put additional money and professional expertise into efforts to improve services, it has avoided sanctions.

Most recently, during a U.S. District Court hearing Nov. 30 – the same day Boss turned over her corrective action plan – the judge in the consent decree case  repeatedly brought up his concerns about money to fund the services required by the consent decree. John J. McConnell, Jr. said he would be keeping an eye on the budget process, both at the state and federal levels.

The BHDDH plan proposes returning to the state a $2 million balance in funds that had been allocated to a performance –based supported employment program that responded to a court order to help more adults with developmental disabilities find jobs. In the plan, Boss said that BHDDH would continue to provide funding for supported employment. Anecdotal information from providers and families has indicated that, even with the performance-based program, employment services have not been available to all who wanted them.  

Boss, meanwhile, outlined other cost savings. She said correcting errors in the needs assessments of 46 adults with developmental disabilities will result in $400,000 in savings, once the individual funding authorizations for those persons are reduced.

Because of widespread complaints that the original assessment shortchanged individual needs, resulting in routine awards of supplemental funds, BHDDH adopted an updated version of the standardized interview about a year ago that was said to be more accurate.

The newer assessment contributed to higher per-person costs that are reflected in much of the $12 million projected deficit in developmental disabilities, Boss said. The 46 errors in assessment occurred because interviewers did not correctly utilize a certain group of questions in the new interview process, she said.  

At the start of the current fiscal year in July, with rising costs from the new assessment already apparent, BHDDH imposed stringent health and safety standards for awarding supplemental funds on appeal.

Of the $12 million projected deficit in developmental disabilities, $4 million is related to “various” cost-cutting initiatives in the current fiscal year which BHDDH does not expect to achieve, Boss said.

She did not describe these unachieved savings in any detail, except to attribute $500,000 to the department’s inability to move residents out of three of five state-run group homes that had been scheduled to close. The remaining two homes are special care facilities that are being consolidated and will close, Boss said. She has said such special care facilities do not comply with a new Medicaid Final Rule on Home and Community-Based Services.

In the last quarter of the fiscal year, beginning April 1,  BHDDH plans to cut the daily reimbursement rates for residents of group homes with relatively mild developmental disabilities, those assigned to the lowest two levels ( labeled A and B) of a five-tier funding scale. This measure is expected to save $200,000.

Additionally, BHDDH has a “continuing commitment” to reducing the population of group homes by 110 during the current fiscal year, which would bring an estimated savings of $900,000, Boss said. She did not elaborate.

In Rhode Island, the primary alternative to group homes is shared living, in which a person with a developmental disability lives with a family in a private home.

During the 27 months between July 1, 2015 and Sept. 20, 2017 the number of individuals in shared living increased by 92, according to BHDDH figures, from 268 to 360. The breakdown includes 40 in the fiscal year that ended July 1, 2016 38 in the fiscal year that ended July 1, 2017, and 14 in the first three months of the current budget cycle.

At the Eleanor Slater Hospital, all but $900,000 of the nearly $4 million shortfall can be attributed to salaries and benefits, including $2.1 million in overtime, Boss said.

The hospital has faced numerous problems, most critically a preliminary report from the Joint Commission in September that signaled Eleanor Slater would be denied accreditation because of unsafe facilities. The report prompted an increase in staffing so that patients are checked every five minutes.

BHDDH plans to move patients out of the substandard facilities, but that consolidation is behind schedule.

RI BHDDH Running Projected $34.6 Million Deficit; DD Services Account for $26 Million Of Shortfall

By Gina Macris

Rhode Island’s efforts to improve services to adults with developmental disabilities - spurred by ongoing federal court oversight – will result in cost overruns of almost $26 million by next June, the end of the current fiscal year, according to projections from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The projected $26 million shortfall is the largest in recent memory for developmental disability services, which typically have run $4 to 6 million over budget during a fiscal year.

In the first quarter spending report to the State Budget Officer, Thomas Mullaney, Rebecca Boss, the BHDDH director, said there are two main drivers of the projected deficit:

• Increased costs attributed to an updated assessment for clients of the Division of Developmental Disabilities, the Supports Intensity Scale–A, or SIS-A, which is generally regarded as more accurate than the previous version in capturing individuals’ support needs, particularly for those with complex medical and behavioral issues.

• An increase in supplemental authorizations that represent successful appeals of funding levels awarded through fiscal calculations made from the results of the original SIS or the SIS-A.  

BHDDH has asked the state Budget Office to consider a supplemental appropriation for the current budget cycle to cover much of the shortfall, with Boss saying the increased spending is consistent with current caseload projections.

But BHDDH also proposes cutting about $5 million from supplemental appropriations before next June 30. Boss has ordered officials to deny requests from individuals with developmental disabilities for supplemental funding, except in emergencies related to health and safety, including the risk of hospitalization. She also made an exception for any “court-ordered services” which may occur.

The order to hold the line on supplemental funds is likely to have widespread impact on individuals and their families, who must make the same request for extra money annually if they believe they have been shortchanged by the SIS or the SIS-A.  Alternatively, they may request a re-assessment.

In her letter to Mullaney, Boss said BHDDH is working to address the current year’s projected deficit and is determining “potential courses of action which would meet client needs, be accountable to regulatory entities, and meet fiscal constraints.”

The Office of Management and Budget is working with BHDDH to “thoroughly review its options,” a spokeswoman for Mullaney said Nov. 9.

BHDDH requested $22 million for supplemental payments in the current budget, according to testimony before the General Assembly last spring.

But in a recent corrective action plan, the department said it authorized over $28.2 million in supplemental payments – more than 10 percent of all payments to private providers - during the fiscal year that ended last June 30. Actual expenditures exceeded $22.3 million.

“The past volume and approval of supplemental authorizations is unsustainable,” BHDDH said.

The plan sets a limit of $18.6 million for supplemental payments in the current budget cycle and reduces the ceiling to $14.4 million in the fiscal year beginning next July 1, with the assumption that the number of requests for supplemental payments will decline as more clients are assessed through the updated SIS-A. 

The corrective action plan also notes that requests for supplemental funds that are denied by BHDDH may be appealed to the Executive Office of Health and Human Services.

The projected $26 million shortfall in the Division of Developmental Disabilities represents the lion’s share of an overall $34.6 million departmental deficit, based on first-quarter spending, which Boss outlined in an Oct. 27 letter to Mullaney, the State Budget Officer.

The state is under pressure from the U.S. District Court to improve the quality of its daytime services for adults with developmental disabilities by moving its system from isolated day centers and sheltered workshops to supported employment at regular jobs paying minimum wage or higher. Rhode Island also must increase the availability of integrated non-work activities. These mandates are spelled out in two agreements with the U.S. Department of Justice, in which the state must correct correct an overreliance on segregated facilities that violates the Americans With Disabilities Act.

The original SIS, accompanied by a $26 million reduction in developmental disability funding, was introduced by BHDDH and the General Assembly in 2011 as an equitable way of distributing available resources, although advocates complained that it was nothing more than a device to control costs, at the expense of some of Rhode Island’s most vulnerable citizens.

In succeeding years, that dollar amount was restored, but the service system was fundamentally altered, resulting in wage cuts, higher worker turnover, and a dependence on lower–cost services in segregated facilities that can be supervised with fewer staff.  The U.S. Department of Justice began its investigation into these facilities - sheltered workshops and day centers - in 2013.

On an individual basis, persons with developmental disabilities, their families, and service providers routinely appealed the funding awarded through the SIS, and at one point supplemental payments became routine.

In the meantime, there were were so many complaints about the SIS that the department ultimately decided to shift to the SIS-A.

But 13 months ago, when BHDDH submitted projections that ultimately went into the current budget, it had no experience with the SIS-A. The revised assessment was introduced in November, 2016. By springtime of this year, however, Boss had enough data to tell legislators that the SIS-A was resulting in higher per-person funding allocations. And she reported that the overall numbers of individuals using  developmental disability services was on the rise.

For the future, Boss envisioned a shift away from supplemental payments as the revised assessment tool better responds to individuals’ funding needs.

Of the overall $34.6 million projected BHDDH deficit, nearly $8.7 million can be attributed to staffing and overtime increases at the Eleanor Slater Hospital for stepped-up patient monitoring in light of a recent warning that the facility may lose accreditation because aging buildings pose too many risks that patients may harm themselves. A risk assessment for the Eleanor Slater Hospital is currently underway, and the results will inform a request for supplemental funding to remedy concerns of the hospital accrediting agency, the Joint Commission, Boss said.

Click here for the BHDDH first quarter spending report.

RI DD Public Forum Highlights Personal Choice, Inclusive Initiatives For Redesigning Services

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

By Gina Macris

During a public forum on Rhode Island’s developmental disability services Aug. 8, Deanne Gagne talked about the importance of personal choice in improving quality of life, for herself and others. 

“It’s really about the person in the center who’s driving the vehicle,” not the service system defining the options, said Gagne, a spokeswoman for Advocates in Action, a non-profit educational organization which encourages adults with developmental disabilities to speak up for themselves.

For Gagne on that day, personal choice turned out to be about the spontaneity of doing somethingmost adults take for granted: making a lunch date.

After the meeting, Gagne connected with an old friend who also attended the forum at the Coventry Community Center.

Because Gagne controls the way she uses her service dollars, she did not need to discuss with anyone how she and her wheelchair would get to and from the chosen restaurant.  Gagne’s assistant simply pulled Gagne’s cell phone out of the bag that hangs across the back of her chair and handed it to Gagne, who marked the date, time and place in her calendar and handed back the phone. That was that.

As a speaker during the forum, Gagne summarized the message of recent public sessions hosted by  Advocates in Action, in collaboration with the state and the Sherlock Center on Disabilities at Rhode Island College, on thinking “outside the system” or “outside the box” in planning for the future.

“It’s back to basics,” she said. “What do you want to do with your life, and what do you need to make that happen?”

Both a 2014 consent decree and a new Medicaid rule on Home and Community Based Services (HCBS) put personal choice at the heart of mandated changes in the approach to services. All developmental disability services in Rhode Island are funded by the federal-state Medicaid program.

One parent who has attended a recent Advocates In Action session on personal choice, or “person-centered thinking”, said there’s a long way to go before such a change becomes everyday reality.

“It seems like a giant step to get from where we are now to where we’re going,” said Greg Mroczek, who has two adult children with developmental disabilities.

None of the developmental disability officials who hosted the forum disagreed with him.

Zanchi           

But Kerri Zanchi, the director of the Division of Developmental Disabilities, and her administrative team made it clear that they want the public to participate in creating a new system of services in a much more active way than is the norm when bureaucracies adopt change.

Kevin Savage, director of licensing, who leads a continuing effort to rewrite developmental disability regulations, said, “We want to have regulations that are meaningful to participants and their families.” The committee rewriting the regulations, which began working in the spring, includes representation from consumers and family members. Savage said a draft of the proposed regulations should be completed in September and released for public comment later in the fall.

Also on Aug. 8, the Division put out a new call for individuals interested in serving on an external quality improvement advisory council.

The advisory council would complement an internal quality improvement committee as part of a broad effort intended to make sure services are faithful to the requirements of the consent decree and Medicaid’s Home and Community Based Rule. 

Anne LeClerc, Associate Director of Program Performance, said she would field inquiries about the quality improvement advisory council. She may be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Zanchi, meanwhile, yielded the floor to representatives of a fledgling effort to revitalize family advocacy called Rhode Island FORCE (Families Organized for Reform, Change and Empowerment), an initiative of the Rhode Island Developmental Disabilities Council.

Semonelli

Chris Semonelli of Middletown, a leader of the group, said it aims to become a springboard for legislative advocacy, starting with an exchange of ideas in the fall among those affected by the developmental disability service system. A date for the event, entitled “Coffee and Cafe Conversation,” has yet to be announced.

The Developmental Disabilities Council plans to support the family advocacy group for up to five years, until it can spin off on its own, according to Kevin Nerney, a council spokesman. Anyone seeking more information may contact him at kevinnerney@riddcouncil.org or 401-737-1238.

Francoise Porch, who has a daughter with developmental disabilities, touched on a long-standing problem affecting both the quality and quantity of available services: depressed wages.

“Direct care staff can’t make a living working with our children,” she said.

The General Assembly allocated $6.1 million for wage increases in the budget for the current fiscal year, which Governor Gina Raimondo signed into law Aug. 3 after the House and the Senate resolved an impasse over Speaker Nicholas Mattiello’s car tax relief plan, which emerged intact.

Although the language of the budget says the raises are effective July 1, the fiscal analyst for developmental disabilities, Adam Brusseau, could not say during the forum exactly when workers might see retroactive checks.

The extra funding is expected to add an average of about 56 cents an hour to paychecks – before taxes – but the precise amount will vary, depending on the employee benefits offered by private agencies under contract with the state to provide direct services.

The latest raise marks the second consecutive budget increase for direct care workers and the first in a five-year drive to hike salaries to $15 an hour.

For high school special education students anticipating a shift to adult services, “there seems to be a logjam” when it comes to families trying to figure out how many service dollars they will have and how far the money will go, according to Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College.

Rosenbaum

Zanchi said the Division of Developmental Disabilities aims to administer assessments that are used in determining individual budgets a year before an applicant leaves high school and needs adult services.  But Rosenbaum said that based on her contact with families of young adults, a year does not appear to be long enough. 

She elaborated: after the assessment, called the Supports Intensity Scale, families must wait a month or more for the results. Only then can parents explore the offerings of various agencies.  They may settle on one agency, only to be told that the agency is not accepting new clients with their son or daughter’s particular need. Then, when families decide to design an individualized program themselves, they must begin planning all over again.

“A year is not enough,” Rosenbaum said.

Zanchi said she will look into the problem.

RI Employment First Task Force Seeks Data To Compare DD Eligibility Policy and Practice

By Gina Macris

A year ago, Rhode Island adopted a policy allowing students with developmental disabilities at least 12 months before they left high school to plan their entry into the adult world.

Now, the Employment First Task Force wants to know whether the policy and the reality are one and the same.

Word of mouth among special education professionals is that in some cases, the families of students notified they will be eligible for adult services from the state Division of Developmental Disabilities nevertheless aren’t given a budget in enough time to make a good adult service plan before they leave school.

Claire Rosenbaum, the Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, raised the issue at the most recent meeting of the Employment First Task Force July 18.

The task force chairman, Kevin Nerney, of the Rhode Island Developmental Disabilities Council, said he would ask state developmental disability officials in writing to come to the group’s next meeting with data showing how closely the state is adhering to its “eligibility by 17” policy.

The state established the policy in July, 2016, in response to a U.S. District Court order which said it must eliminate service gaps for eligible young adults once they leave high school. Judge John J. McConnell, Jr. had been presented with evidence that eligible young adults sat at home doing nothing for weeks or months after they left high school because adult services were not in place.

Young adults are one of four categories of individuals with developmental disabilities who are protected by a 2014 consent decree requiring the state to move away from sheltered workshops and non-work programs akin to day care toward purposeful activities in the community, with an emphasis on jobs paying at least minimum wage. 

The consent decree envisioned the Employment First Task Force as a group representative of adults with developmental disabilities, families, and community organizations that could serve as a bridge between the public and state government.

The eligibility policy says that, unless there is a need for extra documentation, students should be notified within 30 days of filing applications whether they will receive adult services. If they are eligible, they should be scheduled for an assessment of need, called the Supports Intensity Scale (SIS, within 30 days. And 30 days after the assessment, they should be notified of the individual funding allocations they have received, according to the policy.

A spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said July 20 that "it will take some time" to gather answers to detailed questions about adherence to the timelines in the "eligibility by 17"  policy and additional questions about the SIS.

Questions raised at Tuesday’s meeting about the eligibility timeline overlapped with queries contained in a task force report to Charles Moseley, an independent monitor appointed by the court to oversee  implementation of the consent decree.

In the report, approved by consensus Tuesday, the task force recommends that Moseley collect detailed information on various aspects of the application and funding process and appeals of decisions made by the state. The task force previously has requested application and eligibility data from the state but has not received it, according to the report.

Other sections of the report covered a number of topics, including “person-centered planning,” an individualized approach to arranging services that incorporates a range of personal choices that go far beyond menus of activities that may offered by one provider or another.

Moseley has made it clear he believes person-centered planning is the foundation for compliance with the consent decree,

Nerney, the task force chairman, said in the group's report that he believes such truly individualized planning “could have a greater positive effect on people’s lives than the consent decree itself. “

At the same time, “you can’t destabilize the current provider system while building a new one,” Nerney warned.

Rosenbaum said that truly individualized, or “person-centered” planning, a comprehensive process requiring a skilled facilitator, can’t be done properly with the amount of money available in the state’s developmental disability system.

The next meeting of the Employment First Task Force, open to the public, has been set for Aug. 8 at 2 p.m. at the Community Provider Network of RI, 110 Jefferson Blvd., Warwick. It will adjourn at 3 p.m. to avoid any conflict with the quarterly public forum sponsored by the state Division of Developmental Disabilities. That forum runs from 4 to 6 p.m. at the Coventry Department of Human Services and Senior Center, 50 Wood St., Coventry.

RI Consent Decree Task Force Wants Feds To Look At Accuracy Of Assessments Used In DD Funding

By Gina Macris

This article has been updated.*

Seven months after Rhode Island state social workers were retrained to better administer a questionnaire used to determine Medicaid funding for adults with developmental disabilities, signs have emerged that not all the interviewers may be conforming to the highly scripted assessment process.

On June 13, the chairman of the Employment First Task Force said the group needs more comprehensive information about any continuing problems with the assessment, the Supports Intensity Scale (SIS). He said he will make a request in writing to the U.S. Department of Justice and a federal court monitor, asking them to look into the situation.

Rhode Island is in the fourth year of implementation of a 2014 federal consent decree asserting the rights of adults with developmental disabilities under provisions of the Americans With Disabilities Act to obtain the services they need to secure jobs and enjoy non-work opportunities in the community.

The consent decree is “very clear” on those rights, said the federal court monitor, Charles Moseley, who listened into the meeting in a conference call.

Moseley said he was “disturbed” to hear an account of a SIS interviewer who said that because a young man was employed, even part time, he could not have the extensive behavioral and medical supports that family members and the service providers said the man needed. In fact, without those supports, the young man could not keep his job.  The task force member who addressed Moseley by telephone in the meeting later asked not to be identified.

Another task force member, Claire Rosenbaum, Adult Supports Coordinator at the Sherlock Center on Disabilities at Rhode Island College, recalled two SIS interviews she has attended since the social workers administering them were re-trained. One was done very well. In the other, the SIS supervisor corrected the interviewer twice.

For example, an interviewer may ask whether certain behavioral problems occur, or whether they have occurred in the last year. But Rosenbaum indicated that the proper phrasing for the SIS is to ask what supports are necessary to prevent those behavioral problems.

The latter approach acknowledges the impact of existing supports in helping adults with developmental disabilities enjoy a better quality of life, something parents and providers had routinely complained was missing from the SIS before the interviewers were retrained.

*(On June 15, Claire Rosenbaum said her comments were not intended as criticism of the SIS interviewers but to make the point that the retraining of interviewers was followed up with supervisory coaching as reinforcement. The two SIS interviews she attended were appropriately administered, she said.  She said her comments, while intended to be positive, did not preclude the possibility that an interviewer or two may not be immediately absorbing the training and coaching provided).

SIS Has History of Controversy in RI

The way Rhode Island uses the SIS to establish funding has been criticized both by the monitor and the DOJ since 2014, when Justice Department lawyers found that there was at least the appearance of a conflict of interest because the agency which administers the questionnaire also allocates individual funding.

Since then, the fiscal arm of the agency which administers the SIS, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) has been transferred to the Executive Office of Health and Human Services (EOHHS).

But Kevin Nerney, the Task Force chairman, said that to the average Rhode Islander, “the state is the state.”  Task Force members floated the idea of having a non-state entity administer the SIS assessment.  

The American Association of Intellectual and Developmental Disabilities, (AAIDD), which developed the SIS, has urged states to avoid even the appearance of a conflict by making a clear separation, or firewall, between the actual interview and the allocation process.  

A U.S. District Court order issued in May, 2016, required the state to change its policy to specify that the  scores on the SIS will be “consistent with individuals’ support needs, separate and apart from resource allocation considerations.” 

Moseley, the monitor, in reporting to Judge John J. McConnell, Jr., earlier this year, the monitor, Moseley, took that idea a step further. In conjunction with bringing greater individualization to supports for adults with developmental disabilities, he has ordered the state to give him quarterly progress reports as it works toward changing its approach to determining needs and funding.  Instead of translating SIS scores into one of five funding levels, as it does now, the state should use the interview results to first draw up individual programs of support. Only then should it apply funding, according to the model envisioned by the monitor.

Meanwhile, Nerney, the Task Force chairman, said outside the Tuesday meeting that the group has repeatedly asked BHDDH over the past two years – without success - for the number of appeals filed by providers or family members contesting funding levels resulting from the SIS.

While that number has not been made public, state Sen. Louis DiPalma, D-Middletown, disclosed in a Senate Finance Committee hearing in April that the appeals generate a total of $21.5 million to $22 million a year in supplemental payments above and beyond the levels determined by the SIS. That amounts to about 10 percent of all payments made to the private agencies that provide most of the services.

Ten percent is too high, DiPalma said, urging BHDDH officials to rework the way they use the SIS.

Consent Decree Allows Exceptions to 'Employment First'

The Task Force also discussed various approaches to developing a variance process under provisions of the consent decree for individuals with developmental disabilities who can’t work or don’t want to work because they fear the challenges of the regular employment.  Language for one or more kinds of variances or exceptions is being drafted, task members reported.

In conjunction with an interim settlement between the City of Providence and the DOJ in 2013 and the subsequent statewide agreement in 2014, the state has adopted an “Employment First” policy which assumes that adults with developmental disabilities can work at regular jobs, with support.

This policy generally has been welcomed by young people, particularly those who have had internships as part of their special education programs in high school and looked forward to working as adults. 

But that reaction has not been universal.  After the policy was adopted in 2013, BHDDH abruptly closed most sheltered workshops without having any plan in place to gradually acclimate those clients to community-based services. The move generated a wave of anger from families whose loved ones had enjoyed the social aspect of the workshops and took pride in their paychecks, even if they were a fraction of the minimum wage. 

Since Governor Gina Raimondo beefed up the state’s response to the consent decree in 2016, various high-ranking state officials have made public assurances that no one will be forced to work if they don’t want to or are unable, contrary to what some families say they have heard from rank-and-file employees in the developmental disability system. 

In a task force discussion on Tuesday of what a variance to the “Employment First” policy might look like. Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, said she understands that some families are turning to segregated adult day care programs for their loved ones that are outside the system licensed by BHDDH. 

These adult programs, licensed by the Department of Health, may take private payments or federal Medicaid funding, according to anecdotal remarks by various task force members.

Moseley, the monitor, said that if Medicaid funding is involved, federal regulations emphasizing community-based services, similar to those of the consent decree, would apply. Both the consent decree and Medicaid regulations governing Home and Community Based Services (HCBS) derive their authority from the 1999 Olmstead decision of the U.S. Supreme Court. The High Court said that individuals with disabilities must be offered services in the least restrictive environment that is therapeutically appropriate, and that environment is presumed to be the community.

Kiernan O’Donnell, co-president of the Rhode Island Association of People Supporting Employment First, said that if families had more information, they wouldn’t be going to segregated programs.

The Task Force, meanwhile, discussed the importance of planning around the individual needs of a particular person. While the principal goal may be employment for one person, it may be health for another, said Deb Kney, director of Advocates in Action.

Planning is a “process. It’s not a form” for checking boxes, she said. Others agreed.

The Employment First Task Force was created by the 2014 Consent Decree to serve as a bridge between the community and state government, with membership drawn from community agencies serving adults and teenagers with developmental disabilities, those who receive services and advocate for themselves, and families. Nerney, the chairman, represents the Rhode Island Developmental Disabilities Council.

RI Proposes E-Records For DD System That Raise Questions About Consent Decree Compliance

By Gina Macris

For the last five-and-a-half months, Rhode Island has been considering eight proposals for an electronic case management system to keep track of services for adults with developmental disabilities.

In part, the electronic system would satisfy demands for up-to-date information so that federal officials could better gauge the state’s compliance with a 2014 consent decree requiring it to shift to community-based daytime services to comply with provisions of the Americans With Disabilities Act.

But the solicitation also indicates that the design of the electronic case management system could conflict with implementation of other requirements of the consent decree, which call for individualization of services and a more flexible approach to delivering them.

Among the vendors submitting proposals is Deloitte Consulting, the company involved in the chaotic rollout of a statewide public assistance benefits computer system known as the Unified Health Infrastructure Project (UHIP), which went live last September. 

At last count, more than 10,000 individuals, which include those with disabilities, are experiencing difficulties with food stamps and other public assistance and medical benefits, according to state officials. And UHIP has contributed to confusion about caseload estimates, used by policy makers to calculate demands on the budget that begins July 1.

Deloitte and the state are still trying to fix UHIP and are negotiating a financial settlement for the $364 million project, although the company recently gave the state a $27 million credit, primarily to cover the cost of re-hiring workers previously let go to help de-bug the system.

The state is appealing a federal fine of $805,197 over the implementation of the project, and the U.S. Attorney’s Office is investigating separate allegations that the federal-state Medicaid program was billed for services that were not provided in connection with the UHIP rollout.

The language of the 116-page request for proposals concerning  the developmental disability program, issued last fall,  indicates that the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) would conduct business as usual in its funding and delivery of services in two key areas:

• The use of a mathematical formula to translate the results of a standardized needs assessment called the Supports Intensity Scale (SIS) into one of five levels of funding, which in turn would define the scope of services, or “service packages.”
• The continuation of a fee-for-service billing system for private providers, which pays out only when a service is provided face-to-face, in 15-minute increments during the day, and in 24-hour segments for residential programs, with rates subject to change on a quarterly basis.

The solicitation remains active even as the Division of Developmental Disabilities has signaled it is gearing up for an overhaul of existing regulations to comply with the consent decree. And in a report filed with the U.S. District Court in April, the state agreed to explore new approaches to funding to follow-up on statistics that showed at least one third of private agencies don’t have the ability to expand the kinds of services the consent decree demands.

The independent federal court monitor who is overseeing implementation of the consent decree, Charles Moseley, has said that funding must respond to the individual’s “goals and preferences” as expressed in an individual support plan.

In other words, the money should follow the person, rather than the other way around, as is currently the case.

During the month of May, the Division of Developmental Disabilities and the Sherlock Center on Disabilities at Rhode Island College have invited the public to attend presentations on the central idea behind personalizing services, or "person-centered" thinking; the notion that individuals with disabilities should have more control over their lives.

The regulatory overhaul will be based on that personalized approach, with families, consumers, and providers participating in the rule-writing, Kerri Zanchi, the division director, said at a recent public forum. 

Asked after the meeting how how changes in practice brought about by the new regulations would be funded, Zanchi said, “When we figure out what it (the service system) would look like, then we need to figure out the funding for it.”

The consent decree, meanwhile, also criticizes the fee-for-service reimbursement model for private providers as insufficiently flexible to accomplish the its goals, which focus on individualized community-based supports for jobs and leisure activities.

In response, BHDDH has established a pilot program for supported employment, which provides bonuses for staff training, job placement, and job retention. It has resulted in 40 new jobs since January, according to a BHDDH official.

But in light of the recent survey indicating gaps in providers’ ability to take on new clients, BHDDH has agreed to take a deeper look at funding.

Through a BHDDH spokeswoman, state officials declined to comment on the solicitation for proposals while bids are under evaluation. The eight bids were opened last Nov. 29, according to the website of the state purchasing office.

The request for proposals appears to respond, at least in part, to complaints about data collection expressed by both Moseley, the consent decree monitor, and the U.S. Department of Justice.

Moseley has said the information was so inadequate that it was impossible to tell whether the state was meeting employment targets and other requirements.  Just a year ago, state officials were struggling to come up with an accurate count of the total number of adults with developmental disabilities who were protected by the agreement.

Since then, the state has adopted a work-around to the existing system that can respond to specific queries from the monitor or the U.S. Department of Justice, but not on a real-time basis. The patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College. 

The budget for the electronic case management system has not been made public. The request for proposals (RFP) anticipated an initial three-year contract period beginning March 1.

Asked about the apparent delay, the BHDDH spokeswoman, Jenna Mackevich, said in an email that “it’s important that the agency take the time necessary to thoroughly evaluate proposals and conduct its due diligence during the purchasing process. “

During the evaluation period, the state also has allowed the expiration of a 120-day ban on vendors changing their proposals, which is spelled out in the RFP. The RFP said the state would consider not only price but various aspects of functionality in the proposals as part of its evaluation.  Vendors would be required to demonstrate their products.

To keep costs down, the state is seeking “off-the-shelf” software with customization not to exceed 15 percent. 

According to the RFP, the new electronic case management system would computerize all record-keeping for the developmental disability service system, allowing access by families, providers, and BHDDH staff for multiple purposes.

Besides Deloitte, the vendors are Consilience Software, of Texas;  Eccovia Solutions, Inc., of Utah; FELCOM, Inc., of Maryland;  FOOTHOLD, Inc. of New York; Mediware, of Virginia; Netsmart Technologies, Inc., of Kansas; and Therap Services, Inc., of Connecticut.