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

McKee: RI DD Services Need $510.6 Million

By Gina Macris

RI Governor’s FY 25 Budget Proposal-

In a budget plan largely driven by the federal court, Rhode Island Governor Dan McKee has proposed $510.6 million in overall developmental disabilities spending for the fiscal year beginning July 1, about $41.5 million more than the General Assembly enacted for the current fiscal year.

Roughly 55 percent, about $283.4 million, of the proposed developmental disabilities budget would be reimbursed by the the federal-state Medicaid program.

At the same time, McKee seeks to close a projected deficit of $28.3 million in the current budget of $469.1 million as the state tries to integrate adults with developmental disabilities into their communities to comply with a 2014 consent decree with the Department of Justice (DOJ).

Much of the shortfall reflects upward cost adjustments made by the Caseload Estimating Conference (CEC), a budget-planning panel which meets twice a year, advising the governor in November and the General Assembly in May.

McKee also would add $2.9 million to the current budget, and $1.1 million in the next one, for “conflict-free case management,” not only to adhere to Medicaid regulations but to comply with the consent decree. Almost all that funding would come from the federal government.

State social workers from the Division of Disabilities will be assigned to check in monthly with those receiving services and their families to determine if their needs are being met, according to a BHDDH spokesman.

It is not clear whether – or how - this arrangement meets the expectations of an independent court monitor overseeing the consent decree changes. The monitor, A. Anthony Antosh, hasn’t issued a report since last August. Antosh has called for “independent facilitators” to help each individual develop a purposeful program of services and to keep track of how the plan works out.

Developmental disabilities programs account for more than $7 out of every $10 spent at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which would get a total of $706.3 million in McKee’s proposal. McKee’s proposed budget for all state spending in the new fiscal year is nearly $13.7 billion.

The latest proposal represents nearly a third more funding for developmental disabilities than the $339.3 million the General Assembly approved just three years ago, in the spring of 2021.

Much of the investment, in recent years, has been used to hike wages for caregivers and their supervisors, for education and training, and for the development of innovative approaches to supporting adults with developmental disabilities.

In three steps since July, 2021, the state has raised the pay for direct care workers by about 49 percent, from $13.18 an hour to a minimum of $20 an hour, in keeping with orders from Chief Judge John J. McConnell of the U.S. District Court, who has been monitoring the state’s efforts to meet the requirements of the consent decree since 2016.

McConnell found that, apart from the impact of the Covid-19 pandemic, historically depressed wages had led to an exodus of workers that prevented the state from offering employment and other services in the community as promised in a 2014 consent decree.

Beginning last July, the $20 minimum hourly rate for workers has been wrapped into a new reimbursement system for private agencies intended to accurately evaluate the needs of individuals, allow them bigger spending limits to get employment and other supports, and to implement administrative changes promoting integration in the community.

The ultimate impact of higher funding on the lives of adults with developmental disabilities remains to be seen. A decade after the state adopted an “Employment First” policy as part of the consent decree, the governor’s figures say that 24.8 percent of the population protected by the consent decree is working in the community, far short of the target 73 percent.

In November, BHDDH told the CEC that private service providers still don’t have the number of workers they need to offer employment-related services and community-based supports for all who want them. A BHDDH report called the shortage “critical.”

 Still, the state’s eye-opening investment in historically underfunded services during the last few years has begun to show results. While a big staff shortage remains, private agencies are beginning to see improvement in their ability to attract new workers.

The recent pay hikes, along with support from a statewide workforce initiative, helped private providers add 274 direct support staff between January and September of 2023, BHDDH officials reported in November.

McKee’s proposal for Fiscal Year 2025, which begins this July, includes nearly $462.4 million in reimbursements to the three dozen private agencies, or subcontractors, who serve as the backbone of the service system the state relies on to carry out the requirements of the 2014 consent decree.

These reimbursements also cover the cost of one-person programs managed by so-called “self-directed” individuals or families. The number of self-directed programs has grown to more than a quarter of the caseload of about 4,000 persons, in part because of the staff shortage at private agencies. Individuals and families, however, report the same kinds of problems finding qualified caregivers as the agencies, especially when it comes to securing employment-related services.

A separate line in the budget would allocate $15.6 million for other costs related to private services, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

These expenses include the salaries of state social workers and administrators assigned to clients of the private providers, as well as human resources support, building maintenance, information technology support, and contracts for electronic records and for education and training provided by the Sherlock Center at Rhode Island College, the spokesman said.

The state also maintains its own network of group homes, which McKee would fund with $32.6 million in the next fiscal year.

All together, these budget categories add up to nearly $510.6 million.

No additional wage increases are planned for the fiscal year beginning July 1, except for those who provide in-home services to adults with developmental disabilities and were included in a comprehensive Medicaid rate review conducted by the Office of the Health Insurance Commissioner (OHIC). For the in-home workers, the governor’s budget seeks about $844,000. The final OHIC report, issued last September, said that the developmental disabilities workforce will be part of the next rate review in two years.

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.

RI DD Issues On Public Agenda Next Week

The Chief Judge of the U.S. District Court in Rhode Island will hold a remote-access public hearing Monday, Dec. 12 on the status of a 2014 consent decree addressing the rights of adults with developmental disabilities to work and enjoy various other activities in their communities.

Separately on Monday, and on Wednesday, Dec. 14, and Thursday, Dec. 15, the state Executive Office of Health and Human Services (EOHHS) will host three remote-access public sessions to gather feedback on a draft plan to comply with a rule of the federal Centers for Medicare and Medicaid Services established in 2014. That rule on “conflict-free case management” requires assessments of need and coordination of healthcare and social services to be separate from the actual delivery of those services.

The hearing on the consent decree, now in its ninth year of federal oversight, will begin at 2 p.m. Monday before Chief Judge John J. McConnell, Jr. Instructions for remote viewing or dialing in for audio are on the court’s public access page, which can be found here.

Scroll down the page to see the listing for USA vs. State of RI alongside Judge McConnell’s name, which includes the meeting ID and password.

The first of the three EOHHS public meetings on the state’s draft plan for so-called Conflict-Free Case Management will begin at 3 p.m. Dec. 12. There will be two other sessions, both at 3 p.m., on Wednesday, December 14, and Thursday, December 15.

Any proposed change in the system for coordinating federally-funded Home and Community-Based Services (HCBS) will affect adults with developmental disabilities, as well as many others eligible for Medicaid-funded HCBS programs.

The way the state addresses conflict-free case management also will play a part in the state’s ultimate compliance with the consent decree. Both are drawn from the Olmstead decision of the U.S. Supreme Court, which held that the Integration Mandate of the Americans With Disabilities Act is intended to give people with disabilities the resources necessary for them to live regular lives in their communities.

Those interested in attending any of the EOHHS sessions must register in advance. The links for registration, as well as an explanation of the reasons for the plan and a copy of the draft document, are on the EOHHS Conflict-Free Case Management webpage here.

Public Slams RI DD Funding Constraints

By Gina Macris

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

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

Rick Jacobsen * All Photos By Anne Peters

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

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

Claire Rosenbaum

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

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

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

Cliff Cabral

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

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

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

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

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

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

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

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

Sue Joinson

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

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

Dorie Carder

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

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

Connie and John Susa

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

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

The audience provided examples of the constraints:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 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 BHDDH Banking On Pilot With Higher Federal Match To Preserve Status Quo On DD Services

By Gina Macris

Rhode Island Governor Gina Raimondo’s budget for developmental disability services creates a dramatic imperative for cost-cutting during the next fiscal year, one that would reduce spending by a total of $21.4 million in state and federal Medicaid funding.

Developmental disability administrators are exploring the option of a pilot Medicaid program with a 90 percent federal match called a Health Home to fill in the gap, but have not yet determined whether it is feasible, and if so, to what extent.

The overall $21.4 million reduction represents the difference between the governor’s $272.7-million proposal for resolving the current deficit in developmental disabilities and the lowered spending ceiling of $250.8 million for the next budget cycle. The budget reduction would involve slashing $18.3 million in reimbursements to private providers and cutting almost $3.1 million from the state-operated network of group homes effective July 1.

Raimondo’s budget numbers reflect a central tension between those who believe that the state simply spends too much on Medicaid entitlements and those who believe that services for adults who struggle daily to cope with developmental disabilities have been chronically underfunded.

Raimondo’s plan for the 2019 fiscal year beginning July 1 treats a multi-million dollar deficit in the existing budget as a one-time event, while the record of the last several years shows that the shhortfall in developmental disability spending is a chronic or structural problem in which the actual cost of authorized Medicaid services exceeds the budgeted figure. 

In addition, Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) officials have made it clear that an improved assessment for gauging individuals’ support needs has been resulting in higher per-capita costs. The conversion from the old assessment to the new one, a process which started in November, 2016, is expected to take another year or two to complete as clients of BHDDH undergo re-assessment, one by one.

BHDDH officials did discover incorrect implementation of some questions in the cases of 46 individuals assessed with the new instrument, resulting in financial authorizations that were higher than appropriate.

In a recent interview, Rebecca Boss, the BHDDH director, said assessors have been retrained on exactly when they should ask those follow-up questions about behavioral and medical needs. The department has no intention of discontinuing the assessment, she said.

For the 2019 fiscal year, BHDDH officials have an idea about how to bridge the funding gap that they say makes both fiscal and programmatic sense. 

 The idea involves a new approach to case management for adults with developmental disabilities called the Medicaid Health Home. The approach would bring in significant increases in federal money, but the concept has yet to be fleshed out.  And the state is only considering a pilot program to test the model.        

 Successfully implementing the new Health Home option appears to be the state’s only safety net to protect the developmental disability service system from service reductions, waiting lists or rate cuts to providers.

In her budget message, the governor promised to reduce neither eligibility nor services for Medicaid recipients, which include adults with developmental disabilities.  

Boss, the BHDDH director, was reminded of Raimondo’s pledge and was asked whether maintaining existing levels of eligibility and services would mean cutting reimbursement rates to service providers.

Boss said, “I don’t think the department is ready to go to a rate cut” to service providers.

Boss said BHDDH has scrapped a plan for reducing reimbursement rates to providers for a relatively small number of group home residents during the third quarter of the current fiscal year.

The state’s private providers of developmental disability services have been struggling financially for years.

“The fiscal stability of our providers is very important to us,” Boss said. BHDDH counts on its private providers to enable the state to comply with demands of a 2014 federal consent decree which invokes the integration mandate of the Americans With Disabilities Act in requiring Rhode Island to end its over reliance on segregated daytime care and sheltered workshops for adults with developmental disabilities.

Boss said the budget for the next fiscal year contains $6.8 million for  reimbursements to private providers for delivering supported employment services required by the consent decree. That’s $2 million more than is expected to be paid out by the end of the current fiscal year for employment-related supports.

The possibility of assigning case management – or coordination of care – to a third-party through a Medicaid Health Home is appealing to BHDDH officials for a couple of reasons.

Using the Medicaid Health Home approach could save the state significant sums of money in the short term. States can apply for an enhanced federal reimbursement rate of 90 cents for every state dollar expended for a maximum period of two years, according to the Centers for Medicare and Medicaid Services.

The current federal Medicaid reimbursement rate is a little more than 50 cents on the dollar.  Medicaid funds all developmental disability services in Rhode Island.

The concept also could solve a looming compliance problem with federal Medicaid regulations. 

In the next few years, the Medicaid Final Rule on Home and Community Based Services will require case management to be conflict-free. That means it must be divorced both from funding agencies, like BHDDH, and from providers who have a vested interest in billing for services.

BHDDH now has about 24 in-house social workers who coordinate services for some 3,700 adults with developmental disabilities.

The Health Home option, a managed-care arrangement which pays a per-capita rate, was first introduced as part of the Affordable Care Act in 2010 and was crafted to encourage providers of medical care to take a holistic approach to their patients’ well-being.

To what extent the objectives of Health Homes encompass the social services has yet to be determined.

Boss indicated that many questions remain unresolved, such as:

•  Which clients of the Division of Developmental Disabilities would qualify for Health Home coverage?
•  What kind of entity would be equipped to serve as a Health Home for case management, and possibly other services?

According to the Center for Medicare and Medicaid Services, (CMS) Medicaid clients eligible for Health Home coverage must have at least two chronic conditions, or one chronic condition, with risk for a second; or have a serious and persistent mental health condition.

 It is not unusual for individuals with cognitive challenges to also struggle with mental health issues or chronic medical conditions, or both. 

 CMS says that Health Homes may offer what it calls comprehensive care management, as well as care coordination, health promotion, comprehensive transitional care follow-up, patient and family support, and referral to community and social support services.

 Boss envisions a two-year pilot program for the Health Home model, beginning sometime in the next fiscal year.

Here are the overall budget numbers, which reflect all sources of funding for all developmental disability programming, both state operated and private:

Fiscal Year 2018

•  Currently authorized: $256.9 million

                                           plus $15.3 million

•  Governor’s proposal:  $272.2 million

Fiscal Year 2019

• Governor’s FY 18 revised budget: $272.2 million

·                                                          minus $21.4 million

•   Governor’s proposal:                   $250.8 million

The $21.4-million reduction includes a cut of nearly $12.5 million in state funding and a loss of $8.4 million in federal Medicaid reimbursements, according to the budget proposal. Other miscellaneous pluses and minuses round out the $21.4 million total cut.

After the first quarter of the current fiscal year, the Division of Developmental Disabilities was overspending at a pace of almost $26 million in federal and state Medicaid funding, including a state share of $12 million. 

But a second-quarter spending report shows the projected deficit for developmental disabilities has shrunk to about $15.7 million, including about $5.8 million provided by the state and nearly $9.9 million in federal funds.

The governor’s proposal covers nearly all of the $15.7 million shortfall. The remaining gap concerns a bookkeeping question: whether BHDDH or the Executive Office of Health and Human Services should be charged for the state’s contract with the independent consent decree monitor.