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.

DOJ, RI Spar Over Contempt In Olmstead Case

Federal Courthouse in Providence

By Gina Macris

The state of Rhode Island told a judge it cannot be held in contempt of a 2014 civil rights consent decree seeking to integrate adults with developmental disabilities in their communities because of circumstances beyond the state’s control.

But the U.S. Department of Justice (DOJ) says that the state has only itself to blame for its failure to comply.

The state’s “persistent choices to under-fund the system have created a dramatic provider shortage” that has left the target population isolated, the DOJ said in a counter-argument submitted Friday, Sept. 10, to the U.S. District Court.

The “refusal to adequately fund the Consent Decree is precisely the kind of self-imposed inability to comply” that undermines the state’s arguments in its defense, the DOJ said.

The decree stems from a 2014 finding by the DOJ that the state violated the Americans With Disabilities Act by relying too much on sheltered workshops paying sub-minimum wages and isolated day care centers, which kept people with disabilities out of mainstream society. The Olmstead decision of the U.S. Supreme Court has re-affirmed the rights of people with disabilities to receive support in their communities to give them a chance to live regular lives.

The DOJ further cites warnings of an independent court monitor a year ago that the state will be unable to comply with the consent decree by 2024 unless it came up with a multi-year plan to overhaul its developmental disabilities system, which for a decade has encouraged segregated care over integrated services. Such a plan has not been forthcoming.

The state’s lawyers, Marc DeSisto and Kathleen Hilton, submitted arguments Sept. 1 in response to a DOJ motion two weeks earlier that asked the Chief Judge of the U.S. District Court to find the state in contempt of the consent decree and impose fines ranging up to $1.5 million per month. Chief Judge John J. McConnell, Jr. has scheduled a hearing the week of Oct. 18 through Oct. 22.

The state’s lawyers maintained the state could not meet benchmarks for integrated employment and other criteria because of the COVID-19 pandemic, as well as resistance by adults with developmental disabilities themselves to work and non-work activities in the community.

But in its reply Sept. 10, the DOJ said the state’s characterization of the population “paints an inaccurate and offensive picture of people with developmental disabilities” and “reflects a profound misunderstanding of the nature, purpose, and obligations of the Consent Decree.”

DeSisto and Hilton, meanwhile, also argued that numerical targets for employment of adults with disabilities were not required by the consent decree, even though, as the DOJ said, documents show that state officials have admitted the opposite in numerous statements to the court since 2014, in writing or in person..

The state’s lawyers also maintained the state cannot be held in contempt until after the agreement expires on June 30, 2024 – an interpretation the DOJ said is unheard of in litigation involving system-wide reform.

In picking apart the state’s position over 28 pages, the DOJ said the state is urging the court “to adopt an interpretation of the consent decree that is “at odds with the decree’s text and purpose,” the DOJ said.

The state maintained the consent decree “imposed what could only be described as a cultural shock on the targeted community. After years of receiving services in “non-community” settings, “they are being told that their lifestyle must change,” the state’s lawyers said.

The DOJ disagreed. Rather than being told what they must do, the DOJ said, those eligible for services and their families have the right to make informed choices after receiving education and support about what working and enjoying leisure activities in the community might mean for them.

The state’s own data show that it “dramatically overstates” the resistance to integrated services, with 80 of 1,877 persons, or 4 percent, opting out of integrated services through a formal variance process, the DOJ said. And it cited a report from a court monitor in 2016 who had said he found “strong broad-based acceptance of the goals and desired outcomes of the consent decree.”

Similarly, the DOJ lawyers rejected the state’s argument that the COVID-19 pandemic prevented compliance with the annual employment targets in the consent decree. The pace of new job placements had slowed significantly more than a year before the onset of COVID-19, the DOJ said.

While the pandemic did make compliance more challenging, the state made “minimal efforts” to serve the consent decree population during the pandemic, the DOJ’s civil rights division argued.

“Given the availability of enhanced federal matching funds for providing integrated Medicaid services like those the Consent Decree requires, the State has the opportunity to increase funding for integrated employment services, provide the full amount of integrated day services to each target population member, and enhance wages to attract the required number of service providers,” the DOJ said. Its memorandum is signed by Rebecca B. Bond, chief of the DOJ’s civil rights division, as well as trial attorneys expected to litigate the case in October.

The state did earmark $39.7 million in federal-state Medicaid money to raise the wages of workers and their supervisors by $2 to $3 an hour in the current budget, a roughly 15 percent increase, but only at the conclusion of court-ordered negotiations between state officials and providers.

DeSisto and Hilton, the state’s lawyers, also said the state is finalizing the language in a request for outside proposals “for evaluation and implementation of new rate and payment options for (the) Developmental Disabilities Services System.” The preparation for the request for proposals indicates that BHDDH plans to go out to bid through the state purchasing system, which can take several months.

The state last conducted a rate review in 2010 and 2011, but the General Assembly did not follow the recommendations of the consultant, Burns & Associates. Instead, it set dozens of reimbursement rates for private providers roughly 17 to 19 percent lower than Burns & Associates recommended, with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) saying that it still expected providers to maintain the same level of service.

In November 2018, a principal in Burns & Associates, Mark Podrazik, testified before a special legislative commission that that a rate review was already overdue. Rates should be reviewed every five years, he said.

A few months later, BHDDH hired NESCSO, the nonprofit New England States Consortium Systems Organization, to analyze Rhode Island’s developmental disabilities system from top to bottom.

Although the NESCSO contract called for a rate review and analysis of alternatives to the state’s fee-for-service reimbursement system, NESCSO was asked to present options for change but to make no recommendations.

The BHDDH director at the time, Rebecca Boss, said the department wanted to expand its analytical capability and make its own choices going forward.

The 18-month contract, which cost $1.1 million, produced a final report and supplementary technical materials which, among many other things, said the provider system was significantly underfunded. Since the report was completed July 1, 2020, BHDDH has remained silent on its findings, and has not exercised options for renewal of NESCSOs services.

In their memorandum, the state’s lawyers said that “the intention of the rate review process is to strengthen the I/DD system and services provided to individuals, as well as to address provider capacity to deliver those same services. Thus, the State can and will at hearing clearly demonstrate that it has been ‘performing its obligations’ under the various sections of the Consent Decree.”

The DOJ has scoffed at that notion. The DOJ said in its original filing in August that it is prepared to show the “State failed even to ask its Legislature for a sufficient appropriation, and that the State failed to make efficient use even of the resources it had – for example, by failing to modify State rules and incentives that favor providers of less integrated services over providers of more integrated services.

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

By Gina Macris

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

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

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

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

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

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

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

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

The proposed schedule of fines:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI Faces High Cost For Fixing DD ADA Violations

By Gina Macris

After funding services for adults with developmental disabilities below their actual costs for nearly a decade, the state of Rhode Island is about to experience sticker shock.

The system of private agencies that provides most services for adults with developmental disabilities is on the verge of collapse, by all accounts, and a federal judge has given the state until Dec. 18 – five days from now – to come up with the money to keep it afloat until the next fiscal year.

The state also is under court order to devise and execute a plan for strengthening the system during the next three years so it can comply with a federal civil rights agreement that requires Rhode Island to integrate adults with developmental disabilities into community life by 2024. With the judge ready to use his power to enforce the consent decree, those costs could increase spending on developmental disability services by a third or more in the next several years.

Last month, a federal court monitor addressed the short-term fiscal gap by suggesting that the state release $2 million a month in unspent funds already allocated to developmental disabilities simply to keep the agencies’ doors open over the next six months. The COVID-19 pandemic has forced agencies to shrink services and drastically reduce billing.

Judge John J. McConnell, Jr.

In a recent hearing before Chief Judge John J. McConnell, Jr. of the U.S. District Court, a spokeswoman for service providers took a different approach, saying the state needs to immediately raise direct care pay, now an average of $13.08 an hour, to enable the private agencies to recruit and retain employees during the pandemic.

Roughly two thirds of these essential workers are women and more than half are people of color, according to the trade association spokeswoman.

A recently-completed report from the association, the Community Provider Network of Rhode Island (CPNRI), fleshes out projected costs:

• An hourly increase of $2.32, to $15.50, would require nearly $44.1 million a year, or 16.4 percent more than the state has currently budgeted.

• A hike to $17.50 would mean an additional $79.8 million, or a 29.7 percent increase in the annual budget

• A $20 hourly rate would add $124.5 million to the budget. That would amount to a 46.4 percent increase in spending.

The report, “A System in Crisis,” said employers need to be able to offer $17.50 immediately to get job applicants in the door during the pandemic. In Fiscal 2022, which begins July 1, the rate should be increased again to $20 an hour.

Monitor’s Calculations More Limited In Scope

The monitor, meanwhile, agrees with the need for pay hikes, although he would allow the state more leeway on the timeline. In his latest report, filed with Judge McConnell Nov. 30, the monitor, A. Anthony Antosh, said the state should raise hourly wages to $17.50 “as quickly as possible” and to $20 by Fiscal 2024, which begins July 1, 2023.

A. Anthony Antosh

Antosh’s fiscal analysis focuses primarily on the changes needed in the final three years of the consent decree. He said there is consensus among various stakeholders with whom he has consulted that staffing and fiscal issues are the two main concerns in implementing the 2014 civil rights agreement.

“The state budget deficit resulting from the COVID-19 pandemic significantly complicates any fiscal analysis and any decision-making about budget planning,” he said.

Antosh makes no specific dollar recommendations but says that figures should be negotiated with provider agencies in a three-year budget plan to be completed in time to begin in the next fiscal cycle on July 1, 2021. He emphasized that the agencies provide 83 percent of the services necessary to support those protected by the consent decree.

Antosh said an ongoing review of the entire fiscal and reimbursement system, itemized in a 16-point court order issued by McConnell July 30, should be complete by June 30, 2021.

He also recommended that steps be taken now to make sure that the specific costs of a strengthened developmental disability system are acknowledged when future state budgets are being developed.

For example, the data on caseloads provided monthly by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to the General Assembly should be included in the Caseload Estimating Conference used to determine human service needs in the overall state budget. That is also one of the final recommendations of the “Project Sustainability Commission,” a a special legislative commission headed by Staite Sen. Louis DiPalma, D-Middletown.

While not acknowledging the actual costs, which pay for entitlement services under provisions of the Americans With Disabilities Act, the General Assembly has often criticized the state’s developmental disabilities system for running over budget.

The governor typically relies on the November caseload and revenue estimating conferences to draw up the budget that is submitted to the General Assembly in January. The legislature, in turn, relies on more finely tuned caseload and revenue estimates in May to finalize a spending plan for the next fiscal year.

Monitor’s Numbers “Illustrate” Solutions

Antosh’s report includes five sets of fiscal projections that can best be described as starting points for discussion rather than cost estimates for system-wide change. For reasons related to the language of the consent decree, the monitor’s numbers cover individuals who were identified in confidential documents between 2013 and 2016 and today make up about 67 percent of the entire population with developmental disabilities.

Antosh said the tables of projections and descriptions of the associated costs “illustrate” various options in reconfiguring daytime services for the 67 percent.

The most comprehensive “illustration “ of the cost of re-inventing daytime employment and leisure activities for the specific portion of the population protected by the consent decree would add $35.6 million to the budget in Fiscal Year 2022, which begins next July 1, Antosh said. An additional $14.9 million would be needed in Fiscal 2023 and $15.8 million extra would be added in Fiscal Year 2024.

In addition to protecting a particular class of people, the consent decree is supposed to lead to a system-wide transformation. And state officials have made clear that they intend to include all people eligible for developmental disability services in a reformed system, not just those identified at the time of the consent decree.

The three increases projected by Antosh add up to about $66.3 million a year in three years’ time. Antosh said the increases need not all come from Medicaid funding but draw on a variety of other public and private sources.

The current annual approved budget for the private service providers is about $268.7 million in federal-state Medicaid funds, although the providers’ ability to bill for reimbursement has shrunk since the start of the pandemic.

Actual spending on privately-run services was about $240.8 million in the fiscal year that ended June 30, 2019, according to state budget figures. Antosh said the increases need not all come from Medicaid funding but draw on a variety of other public and private sources.

CPNRI, meanwhile, offered estimates for system-wide reform that would not only increase wages but provide for more labor-intensive supports in the community in keeping with the requirements of the consent decree. The organization’s report said that at a direct care rate of $17.50 an hour, the more labor-intensive option would cost between $112.9 and $158.9 million, depending on the number of hours provided and other variables, including the level of independence of each individual as perceived by the state’s assessment tool.

CPNRI’s report incorporated work completed earlier this year by BHDDH consultants, as well as earlier projections done for the state by different consultants.

COVID-19 Exacerbates Inequities

The pandemic has highlighted the inadequacy of the poverty-level pay of direct care workers in the private sector. The average wage of $13.18 an hour falls below many entry-level jobs in retail, delivery, warehouse, restaurant and janitorial fields, according to the recent report from CPNRI.

That rate is also nearly $5 less than the $18 minimum hourly rate the state pays its own employees to do the same work, running a small parallel system of group homes for about 125 adults with developmental disabilities.

The years-long difficulties faced by providers in recruiting staff have reached critical proportions during the COVID-19 pandemic, leaving many individuals without services and crippling the agencies’ ability to generate income.

The crisis has been nine years in the making.

In 2011, the General Assembly devalued the private provider system when it adopted a new reimbursement model and budget cuts that were justified with an executive branch memo that simply said providers could deliver the same services with less money.

The $26- million budget cut resulted in layoffs and slashed wages. Entry-level positions for caregivers, once the starting point of a career ladder for caregivers who did not necessarily have college degrees, became minimum-wage, dead-end jobs.

At the time, the Department of Behavioral Healthcare, Developmental Disabilities (BHDDH) ignored the recommendation of an outside consultant who said direct care workers should receive a minimum of $15 an hour within a year’s time.

The state pleaded poverty in the aftermath of the financial crash of 2008 and 2009, but by 2011, most other states were either holding steady on previous cuts or beginning to reverse reductions in human service spending, including those for people with developmental disabilities.

The austerity move accompanied a new reimbursement system billed as “Project Sustainability,” intended to equitably distribute available funds to eligible adults with developmental disabilities. The reimbursement model incentivized congregate care in sheltered workshops and day care centers – the least costly form of supervision. Subsequently, the DOJ found that an over-reliance on congregate care violated the Integration Mandate of the Americans With Disabilities Act. That finding led to the consent decree.

In a recent report, CPNRI said that COVID -19 has thrust a system developed and funded for congregate care into one that must deliver personalized services to mitigate infection among a vulnerable population.

Long-term effects of neglect on the system prevent providers from being “agile and responsive to meet the demand and needs of the community,” said the report. For example, the reimbursement model assumes that 40 percent of services will be delivered in center-based care, which is prohibited by public health concerns.

Read the court monitor’s report here.

Read the CPNRI report, “System in Crisis” here.

Judge Signals Stepped-Up Oversight Of RI Olmstead Consent Decree

By Gina Macris

John J. McConnell, Jr.

Chief Judge John J. McConnell, Jr. of the U.S. District Court is gearing up to order a soup-to-nuts overhaul of Rhode Island’s troubled developmental disability service system and he wants a detailed plan hammered out during the next year. 

Chronic problems exacerbated by the COVID-19 pandemic have pushed McConnell’s long-simmering concerns over the fiscal stability of developmental disability services “front and center,” as the judge put it during a public hearing in mid-May.

At that time, he asked an independent court monitor to recommend steps for ensuring the long-term survival of a reformed system that will be in full compliance with the Integration Mandate of the Americans With Disabilities Act (ADA). The proposed directive resulted from the monitor’s recommendations.

The order, sent to lawyers for comment earlier this month, says the state must fix systemic problems that pose “fiscal and administrative barriers” to compliance with a 2014 civil rights consent decree, which calls for integrated work and non-work activities based on a 40-hour week of services.

The barriers to compliance include the major pillars of a fee-for-service system the General Assembly enacted in 2011 that incentivized segregating adults with developmental disabilities in sheltered workshops and day care centers, in violation of the ADA’s Integration Mandate, according to findings of the  U.S. Department of Justice (DOJ). The Integration Mandate was re-affirmed by the U.S. Supreme Court in the 1999 Olmstead decision.

Although the last sheltered workshops closed in 2018, some center-based day programs were still in operation before the pandemic hit.

Hearing Scheduled July 30

McConnell has given state and federal lawyers until July 30 to  tell him why his three-page directive should not move forward as a formal order, with a deadline of June 30, 2021 to develop a new system that meets the needs of the roughly 4000 individuals it serves.

Lawyers for the state and the DOJ have responded with an agreed-upon list of topics to be discussed at an upcoming hearing on the status of consent decree compliance.

The agenda, filed with the court July 23, said the state would address both long-term compliance with the consent decree and the immediate pressures posed by the COVID-19 pandemic on the developmental disabilities system.

Specifically, the lawyers said they would present information on:

• Integrated employment and day services and the state’s phased reopening

• Support for providers and families during the continuing COVID pandemic

• Preparations for a potential second wave of the pandemic

• The fiscal issues and administrative barriers identified by the judge and a plan by the state to resolve them in phases, beginning with quarterly funding authorizations, staffing ratios, and the requirement to bill for daytime services in 15-minute increments.

Finally, the agenda said the discussion would include the state’s plans for substantial compliance with all requirements of the consent decree by 2024, the year it expires.

The judge’s proposed order would involve the state’s Medicaid administration, the Governor’s office, and the General Assembly in developing solutions to problems in the developmental disability service system and would require progress reports every two months between August 30 and June 30, 2021.

McConnell also wants the state to collaborate with families and providers in developing their plans.

McConnell is expected to take up the proposed order during the remote video hearing on July 30, beginning at 2 p.m. The public may sign in to attend no later than 1:45 p.m. through video or telephone, with instructions posted on the court’s public access web page, here.

COVID-19 Forced Near Shutdown Of Day Services

The coronavirus has hit hard at gains made in the number of regular jobs worked by adults with intellectual or developmental disabilities and the time they spend enjoying non-work activities as part of their communities.

A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) indicated that about 35 percent of those who had jobs March 1 were still working at the end of May.

Non-work recreational and other activities also have been decimated, but no figures were available from BHDDH about the number of people who don’t have any daytime supports or can’t get the same number of service hours they had before the pandemic.

Parents expressed alarm about a lack of guidance on the resumption of services during a July 21 on-line forum hosted by the Community Provider Network of Rhode Island (CPNRI.)

Susan Willemsen, a parent, wrote in the chat box that accompanied the video meeting: “This is very scary, especially for the parents who need to work and your child does not understand the situation. It is very difficult to be home working 40 hours to survive and take care of a child who is 100% dependent on you. Trying to understand where we go from here.”

Tina Spears, executive director of CPNRI, said providers remain in a precarious financial position and called on the entire developmental disabilities community to press state and federal officials for more funding and priority status for group home operators to conduct on-site testing and gain access to personal protective equipment.

By all accounts, some three dozen private service providers licensed by the state to support adults with developmental disabilities were in tenuous financial condition before the coronavirus pandemic hit Rhode Island in March.

Coping with the pandemic has further exposed gaps in funding and service delivery, which in turn raise questions about the providers’ ability to survive long enough to benefit from a court-ordered restructuring without more immediate and urgent intervention. 

For example, the need for social distancing calls for one-on-one or small group staffing, preferably with the same clients consistently matched to the same support people. But the current funding structure typically will pay for six hours a week of one-on-one support, according to Spears.

Judge Spells Out Requirements

McConnell, meanwhile, indicated he wants change from the first moment an individual or family applies for services from the Division of Developmental Disabilities (DDD).

McConnell said there is a need to consolidate application procedures “for all pertinent RI services into one process.”  That includes streamlining the process for determining Medicaid eligibility and eligibility for developmental disability services, respectively, as well as any other state-funded supports a person might need.

Within the developmental disability service system itself, the judge wants the state to “review, address, and develop a strategy” for resolving problems in the following areas:

• The process and timeline for determining DDD eligibility and individual budgets, as well as the process and timeline in which individuals select private provider organizations.

• The process in which families and service providers appeal DDD’s decisions on eligibility, designated level of need, or funding level.

• The requirement that providers document each staff person’s time, in connection with each client, in 15-minute increments during the day as a condition of reimbursement.

• Reimbursements that are linked to specific staff-to-client ratios. McConnell didn’t spell out the details of how those ratios hinder integration, but one provider has offered a memorable example: The provider said the staffing ratios forced him to group together five clients with widely differing interests for job exploration in one community setting where he could supervise without help from another staffer. 

• Funding authorizations for each client that last only three months at a time, with no ability to carry forward any unused portion of the budget beyond the designated fiscal quarter. That feature, combined with the fee-for-service structure of the billing services, means that unless there is 100 percent attendance by all persons at all times, the spending ceiling can never be reached. A consultant’s study several years ago found that providers billed for an average of 85 percent of funding authorizations.

  The requirement that people with intellectual and developmental disabilities, recognized as life-long conditions, must periodically re-establish their eligibility status for services.

McConnell also asked the state to come up with:

• A clear definition of functions and activities for which funding is permitted, along with the associated rates for each.

• Different funding levels for different activities that are “responsive to individual support needs.”

• Guidance on combining individual budgets at the request of the people involved

With the state shutdown beginning in March, service providers shifted their attention to the safety of those in group homes.

A total of 10 group home residents have died from COVID-19, according to a BHDDH spokesman. As of July 21, 161 group home residents had tested positive and a total of 48 had been hospitalized at one point or another. Five people were in the hospital on July 21, the spokesman said.

Spears, the CPNRI director, explained during the virtual public forum that providers have faced unprecedented costs in securing personal protective equipment for staff, carrying out aggressive cleaning protocols and paying for overtime, while being unable to bill the state for many services.

Providers did get some emergency federal assistance channeled through the state, albeit less than what was originally promised, to continue operations through periods of the highest risk and to give temporary pay raises to staff. But those supports have now ended, Spears said, and there’s “no grand way or plan forward” for moving the system to a new normal.

Spears said a top priority is permanent pay hikes for staff, who have been chronically underpaid and have “a thousand reasons” during the pandemic to stay home.

State officials are waiting for Congress to decide on a second stimulus package before moving ahead to set the budget for the current fiscal year. The pace of budget deliberations is expected to pick up in early August, said State Sen. Louis DiPalma, D-Middletown, who is first vice-chairman of the Senate Finance Committee.

In a brief interview the day after the meeting, Spears said the imperative for moving forward with a plan for re-opening developmental disability services should flow from the state’s legal and moral responsibility, not the budget.

State officials can “sit in a holding pattern and worry about the budget all you want, but these are human lives we’re talking about,” she said.

RI DD Legislative Commission Seeks To Change Payment Methods For DD Service Providers

By Gina Macris

Louis DiPalma * All Photos By Anne Peters

Rhode Island must find an alternative to the fee-for-service system used to reimburse private agencies that provide services to adults with developmental disabilities, a special legislative commission has concluded after more than a year’s study.

The 21-member panel chaired by State Sen. Louis DiPalma, D-Middletown, is finalizing more than a dozen recommendations, most of them aimed at changing key provisions of the payment system, known as Project Sustainability, which has been in place since 2011. Then, Rhode Island’s approach to serving adults with developmental disabilities relied heavily on sheltered workshops and day centers, an approach that figured in a civil rights investigation by the U.S. Department of Justice two years later.

Rhode Island no longer has sheltered workshops, thanks to a 2014 consent decree resulting from the DOJ investigation, which calls for enabling adults with developmental disabilities to become part of their communities in accordance with the U.S. Supreme Court’s Olmstead decision reaffirming the Integration Mandate of the Americans With Disabilities Act.

But the underlying regulations of Project Sustainability, coupled with inadequate funding, still hinder the best efforts of state officials, professionals and families to help adults with developmental disabilities engage in the activities they choose in their communities, according to testimony heard by the commission.

DiPalma presented the recommendations at a Jan. 14 meeting that concluded the work of the Project Sustainability Commission but set the stage for continued engagement by a smaller steering committee and subcommittees to advance the implementation of legislative and other changes.

The commission would replace fee-for-service reimbursement with “bundled” allocations for individuals that would give providers a set sum for each client over the course of a year, providing greater flexibility in individualizing programs. One recommendation would also simplify the billing process.

The current system guarantees funding for only three months at a time, with documentation of daytime activities required in 15-minute increments. By regulation, staffing ratios are linked to one of five levels of funding a particular person receives, not to the staffing required to support a person at any given time.

In this scenario, some residents of a group home may end up going along on a housemate’s outing, even though they have no interest in it. The commission recommends such ratios be eliminated to allow providers greater flexibility in assigning staff.

The commission’s recommendations cover some of the same ground as outside consultants who are in the midst of an 18-month study of the developmental disability system at the behest of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). The consultants are supervised by the New England States Consortium Systems Organization (NESCSO), which is expected to conclude its work June30.

DiPalma’s expectation is that NESCSO will recommend a way forward for a new funding model to support individualization and integration in the community, with an emphasis on increasing employment opportunities for adults with developmental disabilities.

Kerri Zanchi (R) Speaks while A. Kathryn Power, NewBHDDH Director, Listens

Kerri Zanchi, a commission member and director of the Division of Developmental Disabilities at BHDDH, reminded DiPalma during the Jan. 14 meeting that NESCSO was hired to provide the department with options, not to make specific recommendations on ways it should restructure.

DiPalma said he appreciated Zanchi’s remarks, but “we’re here because of 2011,” the year the General Assembly enacted Project Sustainability, with a $26-million budget cut that ignored recommendations by outside consultants. The average pay for direct care workers still falls below the benchmark of $13.97, an hour recommended by the consultants in 2011.

“We’re still trying to claw our way out of that hole,” DiPalma said. He reiterated his view that NESCSO should be asked to make recommendations, not simply suggestions.

High on DiPalma’s priority list is a multi-year effort to address critical shortages of direct care workers by gradually increasing wages to make Rhode Island competitive with Massachusetts and Connecticut, one of the funding-related recommendations supported by the commission.

He encouraged commission members to continue their advocacy in a direct and respectful manner. “Do not take no for an answer on changes that are necessary,” DiPalma said. “Do not be combative,” he said, but open the door to collaboration and compromise by outlining the problem and asking for help in figuring it out.

The Commission’s funding-related recommendations said the budgeting process should be transparent. The developmental disabilities caseload should be part of the Caseload Estimating Conference held in conjunction with the Revenue Estimating Conference twice a year by the chief fiscal officers of the governor and the legislature to better inform budget preparations regarding the state’s social service obligations, the commission said.

In addition, the state should no longer use a disability-related assessment for calculating individual funding allocations according to a secret formula, or algorithm. Instead, the commission said, the assessment, called the Supports Intensity Scale, should be used for helping planners design programs of support for adults with developmental disabilities, the purpose for which it was designed by the American Association on Intellectual and Developmental Disabilities.

To eliminate inherent conflicts of interest between the state funding apparatus and service providers, individual service programs should be written by independent planners, the commission recommended. It did not favor a separate multi-million dollar social service case-management entity, called a “Health Home,” which BHDDH hopes to set into motion with Medicaid funding to satisfy federal conflict-of-interest regulations.

The commission also wants to bring to the table a barrier cross-section of public agencies to work on eliminating barriers to integration, like challenges in transportation and employment-related services. These agencies would include the Rhode Island Public Transit Authority and the state Department of Labor and Training (DLT), in addition to BHDDH and the Office of Rehabilitation Services, as service providers, families and consumers.

DiPalma said he would like to see BHDDH ask DLT to take the lead on employment services for adults with developmental disabilities.

Among other recommendations are these:

• BHDDH should establish crisis intervention capabilities that can respond to mental health emergencies in the community and prevent costly psychiatric hospitalizations

• The state should create a seamless transition for young people and their families from high school to adult services. The existing process has been compared to “falling off a cliff.”

DiPalma said the recommendations will be finalized in the coming week to incorporate comments made at the meeting. A steering committee, including himself and seven other commission members, will remain active, setting into motion small working groups to address legislative and other issues and reconvening every three months to review progress.

He asked the commission members “to do one thing: hold yourself and each of us accountable to stay on track” on behalf of the 3,835 people who currently receive developmental disability services.

New Olmstead Consent Decree Monitor Wants Reality Check On RI DD System Transformation

A. Anthony Antosh * Photo By Anne Peters

By Gina Macris

As the new federal monitor of a 2014 civil rights consent decree affecting Rhode Islanders with developmental disabilities, A. Anthony Antosh wants to get a reality check on where reform efforts now stand and to create a road map for what remains to be done to enable people to live inclusive lives, in accordance with the U.S. Supreme Court’s Olmstead Decision on the Integration Mandate of the Americans With Disabilities Act.

Antosh’s vision, which parallels the requirements of the consent decree is that:

• Adults with developmental disabilities who once spent their days in sheltered workshops or day care centers will have a chance to work at regular jobs and will be able to do whatever non-work activities they want in the community- with the needed supports.

• Teenagers and those in their early twenties still in school, who are also protected by the consent decree, will get the services they need to make a smooth transition to the world of work and adulthood.

The process for assessing how far the state has moved toward inclusion includes not only a look at the state’s compliance with the consent decree’s prescribed goals, or “benchmarks,” but at the impact on the people’s lives as well, Antosh said.

For example, the state’s “Person-Centered Supported Employment Performance Program” tries to boost the number of people who get hired to bring the state into compliance with target job numbers specified in the consent decree. Antosh says he wants to find out if meeting those target employment numbers also means that everyone who wants to work has a chance to get a job.

Antosh outlined his vision at a Dec. 17 meeting in Warwick with the Employment First Task Force (EFTF), a community-based committee empowered by the consent decree to serve as an advisory group to state government and federal officials.

After his appointment as monitor by U.S. District Court Judge John J. McConnell, Jr., Antosh said, “a lot of people wanted to give me advice but lots of people felt their voices had not been heard. I want them to be heard.”

Antosh said he can’t process calls and emails from all of the thousands of Rhode Islanders with a stake in developmental disability services, but over the next couple of months he wants to hear from as many people as possible.

He turned to EFTF to help him collect and analyze the information in the next few months because its 15 members have broad and deep connections to the various constituencies with a connection to the developmental disability service system as consumers, families or professionals.

The EFTF membership represents non-profit organizations like the RI Developmental Disabilities Council, the Sherlock Center on Disabilities at Rhode Island College, Advocates in Action, Disability Rights Rhode Island, and includes a delegate from the state’s special education directors, the leaders of a statewide developmental disability professional organization, family members with ties to advocacy groups, service providers and adults who themselves receive state supports.

In the next two months, Antosh said, he wants the EFTF members to ask these questions of their constituencies:

• Has life improved as a result of the consent decree reforms already in place?

• What changes must yet be made?

• What will a transformed system look like to them?

Right now, Antosh said, he could go around a room and get a different answer from everyone on “where we are now.”

“I want many data points to know it has changed,” said Antosh, drawing on his background as a researcher and educator in developmental disability and special education issues. Antosh was the original director of the Sherlock Center at Rhode Island College, serving from 1993 until two months ago (check.)

Early in his career, he was one of the plaintiffs the lawsuit that forced the state to close its institution for people with disabilities, the Ladd School. It was shuttered in 1994. And the judge who now presides over the consent decree case, John J. McConnell, Jr., was a young lawyer who represented the plaintiffs in the Ladd school suit, Antosh among them.

Antosh said he has consulted with McConnell on his grass roots, fact-gathering approach. He said he will “do nothing without consultation with the judge.”

McConnell appointed Antosh interim court monitor November 25 to end a stalemate of more than four months between the state and the U.S. Department of Justice on the selection of a replacement to the original consent decree monitor, Charles Moseley, who stepped down for health reasons.

At the EFTF meeting, Antosh, now entering his 51st year in the disabilities field, outlined some of his core beliefs:

• Equity. If an opportunity is available to one, it should be available to all, he said.

• Policy backed by research. He said he has seen well intentioned people putting forward well-intentioned policies which have no impact on people’s lives because there’s no research or evidence to indicate they will work.

• Individualization. Antosh said he has seen many plans for an individualized program of services with information on the goals but no steps outlined on how those goals should be reached. “I believe in real plans,” he said.

• Individual control. People with developmental disabilities and their families can spend their allocation much better if they control it, Antosh said.

Overall, Antosh signaled that he wants flexibility in the system to enable the individualization that is at the heart of the consent decree. “I struggle with rigid anything,” he said.

Judge Closes Nation's First "Sheltered Workshop" Case Early, Citing Great Strides in Providence

Etta Carmadello, Special Education Director for Providence Schools, is interviewed outside U.S. District Court Sept. 26. Onlookers, left to right, are Christopher Coleman, principal at Mount Pleasant High School; Lisa Vargas-Sinapi, Carmadello’s predecessor in the director’s post; Linda Butera Noble, former Director of Community Services at the Birch Academy at Mount Pleasant High School; and Mary Ann Carroll, the lawyer representing the city of Providence. Carroll credited Vargas-Sinapi, Noble and Carmadello in providing critical leadership that ultimately brought a landmark civil rights case against the city to a close. All photos by Anne Peters.

By Gina Macris

The U. S. District Court in Rhode Island has approved an early conclusion to the nation’s first “sheltered workshop” civil rights complaint, brought six years ago against the city of Providence, with federal officials praising the swift, comprehensive, and lasting efforts at Mount Pleasant High School to transform the lives of its students with intellectual and developmental disabilities.

“The hard, tedious work you did has really had a positive effect on people’s lives,” said Judge John J. McConnell, Jr. in a hearing Sept. 26, addressing a packed gallery in a small courtroom filled with state, city, and school officials involved with developmental disability services.

When the U.S. Department of Justice first investigated in 2013, lawyers found the Birch Academy in an isolated classroom in the basement of Mount Pleasant High, where students “collated jewelry” in a sheltered workshop setting that served as a “pipeline” for a lifetime of such work, said DOJ lawyer Victoria Thomas.

The 2013 civil rights agreement in Providence, based on the Olmstead decision of the U.S. Supreme Court, was the first in the nation to address the rights of individuals with developmental disabilities to live, work, and play in their communities under the Integration Mandate of the Americans With Disabilities Act (ADA).

Today, students attend classes integrated with their typical peers. They receive services designed to help them identify and develop their own interests and skills and to try them out in two 60-day work experiences before they graduate, Thomas said. She said those internships are “life-changing” for some people. For example, Miriam Hospital has offered permanent jobs to several Birch graduates.

Mary Ann Carroll, a lawyer representing the city, said that at the outset, former schools superintendent Susan F. Lusi took swift action in empowering the redesign of the Birch program in the summer of 2013, a job that has involved changing the mindset of staff and “parents who thought that a sheltered workshop was appropriate for their children.”

Judge McConnell, in dismissing the case nine months ahead of schedule, said he imagined that resistance was similar to what he encountered decades ago as a lawyer for activists seeking to close the Ladd School, the state’s now-defunct institution for people with developmental disabilities.

“Change is hard when it has to do with human beings – how they perceive themselves and how others perceive them,” he said.

He said he tells own children that he wants them to be “problem-solvers and not problem identifiers.”

“It’s good to see public servants be problem-solvers,” McConnell said.

McConnell asked if either the DOJ or an independent court monitor had any concerns about maintaining the changes at Mount Pleasant in light of the takeover the Providence school system by the state Department of Education.

The “thought of stalling or going backward is unacceptable,” the judge said.

The monitor, Charles Moseley, said he has not spoken to state education officials about the takeover.

But Thomas, the DOJ lawyer, said she had read the outside report which prompted the state to move ahead with the takeover and found “no overlap” between the faults it found in the district as a whole and the compliance efforts at Mount Pleasant High.

Charles Moseley, Left, and Judge John J. McConnell, Jr., in the Judge’s Chambers After Court Sept. 26

Carroll, the city’s lawyer, said the changes have been made in such a way that she does not feel they will “evaporate.” Emphasizing the teamwork of key leaders in the school department and the support of current and former mayors, she said she hopes the successes at Birch can serve as a model for other cities and school departments around the country.

“The message I want people to take away is that when we work together, we can make things happen,” Carroll said.

Moseley himself is leaving the monitor’s post, but his successor will continue to keep tabs on Mount Pleasant as part of another case which grew out of the initial “Interim Settlement Agreement“ of 2013.

At least three departments of state government still have obligations under a broader, statewide consent decree signed in 2014 to bring integration into services for all Rhode Island public high school students with developmental disabilities. Once they become adults, the state must help them find regular jobs and engage in community activities. The statewide consent decree remains in effect until 2024. The Interim Settlement Agreement was to have expired July 1, 2020.

A spokeswoman for the state Department of Education affirmed its commitment to continuing the reforms at Mount Pleasant in keeping with the 2013 interim agreement and the subsequent statewide consent decree, in response to a recent question from Developmental Disability News.

The Providence school department “will be expected to continue to meet the decree requirements, and our agency will continue to provide support and technical assistance to the entire state to ensure that our school communities are meeting the Employment First policy,” said spokeswoman Meg Geoghegan.

The Employment First Policy, which has been adopted statewide, assumes that all adults with disabilities can work in the community, in keeping with the Integration Mandate of the ADA.

The end of federal oversight at Birch, which over the years has involved between 51 and 65 students at any one time, also has marked the end of Charles Moseley’s role as the independent monitor. He announced in July that he planned to step down at the end of September, citing health concerns.

The consent decree gives the state and the DOJ 30 days after they receive a letter of resignation to reach agreement on a new monitor. If they can’t agree in that time frame, according to the consent decree, each side is to submit the names of up to three candidates to the judge, who will make the decision.

In response to recent questions from Developmental Disability News, a spokesman for the state Executive Office of Health and Human Services said: “DOJ and the state continue to work collaboratively on the selection process for a replacement monitor and have kept the Court aware of their work in this important decision.”

DOJ Urges End To City’s Obligations In Landmark Providence "Sheltered Workshop" Case

By Gina Macris

The U.S. District Court will hear a request by the City of Providence and the U.S. Department of Justice for early termination of a civil rights agreement affecting intellectually challenged students at Mount Pleasant High School who were once trained only to perform repetitive tasks in a sheltered workshop.

The hearing was scheduled for Sept. 26 after the DOJ formally signaled its support for the city’s request, saying the city and its school department have transformed services for students in keeping with the Integration Mandate of the Americans With Disabilities Act.

“Students are now integrated with their classmates and receive services to prepare them for integrated work in careers that match their interests and abilities,” said lawyers for the DOJ.

In accordance with the agreement, “the City will ensure that these changes are lasting,” the DOJ said in written arguments urging Judge John J. McConnell, Jr. to dismiss the case against the city.

The DOJ praised the city’s “rapid implementation” and “consistent adherence” to the provisions of the agreement, saying it has resulted in “substantial compliance” a year ahead of schedule. The government’s conclusion concurs with a recent report filed by an independent court monitor.

“This is a victory for all involved,” the DOJ said.

The DOJ lawyers pointed out that “this agreement was the first in the nation to address the rights of individuals with disabilities to receive integrated employment services instead of segregated workshop services.”

The DOJ did not address the city’s compliance in the context of the impending state takeover of the city’s school system. The request for early dismissal was made last winter - months before the appointment of a new state Commissioner of Education, who received a devastating outside evaluation of the school system from the Johns Hopkins Institute for Educational Policy.

The agreement, signed in 2013, is due to expire on July 1, 2020. It served as a prototype for a subsequent statewide consent decree signed in 2014 which obliges the state to provide transition services to students with developmental disabilities in all high schools across Rhode Island and to transform all work and non-work adult services to comply with the ADA’s Integration mandate, which has been affirmed by the Olmstead decision of the U.S. Supreme Court.

An early dismissal of the city’s obligations under the 2013 Interim Settlement Agreement (ISA) would mean that the city would no longer have to prepare for frequent calls and periodic visits from the monitor and the DOJ lawyers, or to file detailed and time-consuming quarterly reports documenting its compliance efforts. But court retains jurisdiction for a year after the expiration date, according to the DOJ.

Granting the city’s request would not affect the state’s continuing obligations for former Birch students who were sent to the now-defunct sheltered workshop, Training Through Placement, which used the Birch Academy as a pipeline for workers. Nor would it curtail the state’s responsibilities for other adults with developmental disabilities throughout Rhode Island who must have access to integrated work and non-work services under provisions of the separate 2014 consent decree.

The two agreements have fostered an “Employment First” policy, which assumes that all adults with developmental disabilities can work at regular jobs in the community. The policy encompasses self-employment and customized employment, which involves cooperation by employers motivated to re-order established job descriptions to get important tasks done by reliable employees. (Exceptions to the “Employment First” policy are allowed on a case by case basis.)

The DOJ said an independent court monitor, Charles Moseley, has found in a recent report that the city has met or exceeded standards for 45 compliance measures in four categories:

• Career development and transition planning

• Trial work experiences

• Training, outreach, and education about integrated employment for school staff, students and families

• Interagency coordination

School personnel have prepared students to obtain competitive employment as adults through “person-centered” planning, which begins by highlighting each student’s individuality; as well as detailed career development plans and vocational assessments, the DOJ wrote.

Moreover, the city’s efforts have extended to former Birch students who left school as early as 2010. The city has undertaken “significant efforts” to locate them and provide vocational assessments, supported employment services and other assistance to help them find integrated employment. The city has reached nearly 50 former students.

“As noted by the court monitor, this ‘look back’ strategy to correct past discrimination showcased the city’s commitment to the objectives of the ISA,” according to the DOJ.

The government lawyers also agreed that the city provides high quality trial work experiences that are individualized and integrated in the community. The agreement requires that every student have two such internships, each one lasting 60 days, before leaving school.

The city “repeatedly went the extra mile to ensure students’ individualized needs were met” and has satisfied the monitor’s concerns about the few cases in which students lacked a second internship, the DOJ said.

Teachers and other professionals working with students participate in frequent training and have “consistently demonstrated their ability to implement the requirements and goals of the ISA, breathing life into the city’s Employment First Policy,” the DOJ said.

The lawyers cited improvements in the school department’s cooperation with state agencies, including regular consultation with a rehabilitation counselor from the Office of Rehabilitation Services and monthly meetings between the city’s special education director and state officials to review the progress of former students who are receiving adult services.

The city’s swift progress in implementing the agreement and “years of sustained reform” have resulted in a myriad of changes in policy, operations, and attitudes that will be “difficult to dismantle,” the DOJ wrote.

And the success of the ISA, “including considerable outreach and education to students, families, and the community, has spread awareness and the expectation that students with IDD are capable of working in integrated settings with services,” the lawyers wrote.

The DOJ noted that Birch students will continue to benefit from the state’s obligations under the 2014 statewide consent decree, which requires students with developmental disabilities in all Rhode Island high schools to receive transition services similar to those developed through the ISA. The statewide decree is to expire in 2024.

The Sept. 26 hearing before Judge McConnell is scheduled for 10 a.m.

Read the next article (below) for monitor Charles Moseley’s assessment of the city’s compliance efforts under the Interim Settlement Agreement.

In addition, click here for an article on a public discussion of the pros and cons of early termination of the city’s obligations.

Monitor Finds Providence School In "Substantial Compliance" With DD Civil Rights Agreement

By Gina Macris

Educators at Mount Pleasant High School have done a good job integrating special education students with their peers and preparing them for the world of work as adults.

That’s the overall conclusion of a federal court monitor who says the Providence School Department is in “substantial compliance” with a 2013 civil rights agreement which ordered an end to unnecessary segregation of students with intellectual and developmental disabilities, mandating instead an inclusive approach that prepares them to live and work in the community as adults.

The 2013 agreement followed a federal investigation which found that the Birch Academy, a special education program operating within a city high school, was in violation of the Americans With Disabilities Act.

The monitor’s report comes as the state prepares to take control of Providence schools in light of an explosive report by a visiting team from the Johns Hopkins Institute for Education Policy, which found dramatic deficiencies in teaching, learning, achievement and discipline throughout the system.

However, the detailed, 80-page report by the court monitor, Charles Moseley, does not place the school department’s compliance efforts in the context of the Johns Hopkins report or the pending state takeover.

The finding of “substantial compliance” sets the stage for a federal court hearing on whether the city should be granted early relief from federal oversight of the 2013 Interim Settlement Agreement (ISA), which is due to expire July 1, 2020. Even if federal oversight is not curtailed early, the school department was still required to achieve substantial compliance by midsummer of this year to have the agreement terminated as scheduled on July 1, 2020, according to lawyers for the U.S. Department of Justice.

The school department had asked to shorten the length of the agreement months before the appointment of a new state Commissioner of Education, Angelica Infante-Greene, who sent in the Johns Hopkins educators to evaluate the entire school system.

A hearing on the city’s request for early relief is expected in early fall, according to a spokeswoman for U.S. District Court John J. McConnell, Jr., who is presiding over the case.

Moseley said his finding of substantial compliance referred only to the city, and not the state, which is also a defendant in the 2013 case because it licensed a sheltered workshop for adults with developmental disabilities where most Birch students ended up once they left school.

In 2014, after a broader investigation, the DOJ extended the finding of unnecessary segregation to all the state’s sheltered workshops and day care centers for adults with developmental disabilities. The state and the DOJ subsequently signed a separate consent decree mandating a transformation of all Rhode Island’s daytime services for adults with developmental disabilities to an inclusive model over ten years.

Students who leave Birch will continue to receive protections under the provisions of the 2014 consent decree.

‘Culture Of Low Expectations’

Moseley’s report recounted the investigation of the DOJ, which found a “culture of low expectations” at Birch, where students performed menial tasks in a sheltered workshop setting inside the school, often without pay, and were redirected to the work in front of them when they indicated an interest in finding work in the community.

Some students sorted buttons by color into bags or buckets that were emptied by staff at night to be re-sorted the following day, according to the findings.

When students with intellectual and developmental disabilities aged out of the school system, they were sent to a nearby sheltered workshop in North Providence. DOJ found that Birch “served as a direct pipeline” to that workshop, called Training Through Placement. Former Birch students often remained there for decades, even when they asked for a change.

Even before the ISA was signed in June, 2013, Providence closed the sheltered workshop at Birch and replaced the principal, putting the program under the supervision of the special education director. The school department set about redesigning the curriculum with the goal of helping students build skills and confidence to realize individualized post-secondary goals as members of the community at large.

Since 2013, the enrollment at Birch has varied at any given time from 51 to 65 students, according to Moseley’s data.

Moseley praised the redesigned Birch program for its “robust, engaging curriculum;” its efforts to integrate students facing intellectual challenges with their peers throughout the school day, and for providing experiences and activities designed to prepare young people to plan for jobs and otherwise lead regular lives once they finished high school.

In stark contrast, the Johns Hopkins team found a shortage of special education teachers in the system as a whole, with some of them admitting they hadn’t been able to meet their students’ individualized educational goals in years.

Though Mount Pleasant High School was one of the 12 schools visited by the Johns Hopkins observers, their final report does not indicate whether they were briefed on the ISA involving Birch Academy students.

Systemic Improvements Cited

Moseley’s assessment cited improvements in staffing, professional development and leadership, as well as collaboration with the Rhode Island Department of Education and state agencies serving adults with developmental disabilities, particularly in connection with the development of transitional and supported employment services.

One highlight of this type of collaboration has been the creation of Project Search, a work internship program at the Miriam Hospital for students aged 18 to 21. Under this program, the hospital has hired some former Birch students as permanent employees.

Other endeavors offering real-world experiences, including practice in independent living, job discovery and employment –related skills, are the Providence Transition Academy and the Providence Autism School to Tomorrow Academy, Moseley said.

Some Difficulty In Compliance Noted

Moseley noted that the school district has had difficulty meeting two requirements:

• Matching each Birch student with two internships before graduation, each one lasting at least 60 days

• · Linking students and their families with representatives of adult service agencies, the Office of Rehabilitation Services (ORS) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Of 11 students who were to leave school at the end of the academic year in June, nine had had two internships by the end of February and the remaining two students each had had one. Of those two, one completed a second internship in June. The family of the remaining student, who uses a wheelchair, did not want her using public transportation to go to and from another trial work experience, Moseley reported. He said the school department should have provided the student other options for transportation.

At the end of any given academic year, Providence reported between 51 percent and 91 percent of students preparing to leave school had completed two trial work experiences, although Moseley said this requirement has been met in the “vast majority” of cases.

He said the school department is making “meaningful efforts” to overcome barriers to the internships, such as transportation, irregular school attendance by some students, specific health care needs of others, and, in some instances, parental resistance.

In introducing students and families to adult services agencies, Moseley faulted the school department for not making it clear to parents that they may ask for a representative of either ORS or BHDDH to attend annual meetings for developing the Individualized Educational Plan (IEP) for their son or daughter. The data on attendance at such meetings showed that ORS or BHDDH had a presence only when students were 19 or older, Moseley said. Transitional services are to be made available beginning at age 14, according to the federal Individuals With Disabilities Education Act.

Moseley said the state has agreed to amend the standard IEP meeting notice to give parents the option of requesting ORS or BHDDH attendance. The state has a contract with the private non-profit Rhode Island Parent Information Network to represent the adult service agencies at IEP meetings of students 14 through 17, Moseley noted.

Mosley said that since 2013, the changes made by the city and its school department “have shifted the focus of education and training toward the accomplishments of key benchmarks and provisions of the ISA.”

Assurances of funding and other important changes have grown out of a collaborative approach involving ORS, BHDDH and others that have resulted in memoranda of understandings “with the intention of producing enduring policy change,” Moseley wrote.

He said his reviews over the past few years “have documented the ability of PPSD (the Providence School Department) to maintain compliance with both the letter and intent of the ISA and strongly suggest that such changes will be maintained as ‘business as usual’ beyond the term of this agreement.”

Feds Consider Early Termination Request For DD Oversight At Mount Pleasant High School

By Gina Macris

A Providence School Department request that the federal government end its oversight of a special education program at Mount Pleasant High School is encountering some resistance and concern because of a more immediate development: The state is taking control of the entire “broken” school district.

Months ago, the city of Providence sought early termination of a landmark federal Interim Settlement Agreement, reached in 2013, in which the school department promised to make major changes in the way special education students at Mount Pleasant High School were being shuttled into a sheltered workshop program in North Providence.

The school system agreed to prepare students in the Birch Vocational Center at Mount Pleasant High School to take advantage of supported employment in the community and to participate in integrated non-work activities in compliance with the integration mandate of the Americans With Disabilities Act.

The U.S. Department of Justice and a federal court monitor are carefully considering the request and have solicited the opinions of various segments of the developmental disabilities community on the pros and cons of terminating the agreement now, a year before it is set to expire.

On July 23, the monitor, Charles Moseley, and Victoria Thomas, a lawyer for the DOJ, discussed possible early termination via conference call with members of the Employment First Task Force (EFTF), an advisory group on matters concerning the 2013 agreement and a broader, statewide consent decree signed in 2014.

On the same day, the Council on Elementary and Secondary Education voted, as anticipated, to empower the state Commissioner of Education to intervene in the Providence School District, taking temporary control, if necessary, of its budget, personnel, and governance.

Thomas said she was concerned about a recent report on Providence schools from Johns Hopkins University’s Institute on Educational Policy which found a deeply dysfunctional system where most students are not learning, principals are struggling to lead, teachers and students don’t feel safe, and some buildings are crumbling around them.

Mount Pleasant High School was one of 12 schools visited by the Johns Hopkins researchers.

At the same time, Thomas said, she personally has been “very impressed with the work Providence has done” with the Mount Pleasant special education students protected by the 2013 Interim Settlement Agreement. Over the last several years, Thomas has participated in many site visits at Mount Pleasant High, as has Moseley, who concurred with Thomas’ assessment. Having done similar visits in other states, Thomas said, she has been “blown away” by the quality of work done to put the needs and wants of students in Providence at the center of their individualized education plans.

“That doesn’t mean that everything is perfect,” Thomas said.

The Interim Settlement Agreement assumes that Mount Pleasant High School students will make a successful transition from school to adult services provided by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. And Thomas said some of the comments that have been received from stakeholders in developmental disability services indicate that the DOJ and the monitor “really need to look into adult services.”

The Providence school department’s involvement in the Interim Settlement Agreement is set to expire in July, 2020, as long as the city is in “substantial compliance” a year ahead of time and the changes made during compliance are found to be lasting.

If the DOJ and the monitor agree to “early termination and we’re wrong,” Thomas said, the oversight of the state’s efforts to integrate adults with developmental disabilities in their communities will continue as part of the overlapping statewide consent decree signed in 2014.

“We’re not leaving anyone behind,” she said. Moseley added that the monitor and the DOJ will continue to have access to data about the progress of the same students as they merge into the adult population.

State Sen. Louis DiPalma, D-Middletown, who attended the task force meeting, expressed concern that even if implementation of the Interim Settlement Agreement has been going well at Mount Pleasant High School, the state of the school system around the program is in question.

Anne Peters, a parent who serves on the task force, asked whether continuing to monitor Mt. Pleasant High might be needed to protect the resources that have been brought to bear to change the prospects for special education students.

“I think we’re expecting quite the chaotic year” in Providence, she said.

“An excellent question,” Moseley said.

Several days before the meeting, Task Force leaders collected comments on early termination that made three main points:

• There seems to have been significant progress at Mt. Pleasant, with special education students having meaningful work trials

• Students still leave school unable to get the appropriate employment supports, like those from other communities, because providers are not accepting new referrals.

• ·The Johns Hopkins report will put Providence under pressure to make many reforms and it would be ill-advised to take the spotlight off students with developmental disabilities for fear they would once again get left behind.

Neither Thomas nor Moseley said when the decision would be made on early termination. Moseley has indicated he plans to complete a report on whether Providence is in substantial compliance with the Interim Settlement Agreement before he steps down as monitor on Sept. 30.

RI To Review "Project Sustainability" Funding Model For DD Services With Help From NESCSO

By Gina Macris

The state of Rhode Island has hired NESCSO, the non-profit New England States Consortium Systems Organization, to review the fee-for-service Medicaid funding structure used to reimburse private providers of services for adults with developmental disabilities since 2011.

The project, launched by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), represents a key step toward meeting the overall objectives of a 2014 consent decree which requires the state to create a community-based system of services to correct violations of the integration mandate of the Americans With Disabilities (ADA.)

The current fee-for-service reimbursement model, called Project Sustainability, incentivizes facility-based, segregated services, according to findings of the U.S. Department of Justice which led to the consent decree.

Project Sustainability, accompanied by $26 million in budget cuts effective July 1, 2011, resulted in drastic wage reductions among private service providers, but raising worker pay alone will not fix the problem.

Project Sustainability also was set up to fund staffing for groups of people engaged in activities in one place but didn’t provide for the degree of supervision or transportation needed to individualize services in the community on a broad scale, as required by the Olmstead decision of the U.S. Supreme Court. That decision re-affirmed the integration mandate of the ADA.

In sheltered settings, for example, the ratio of direct care workers to clients might have been set in the funding formula at 1 to 10, but additional staffing would be needed to support that many people in the community, according to language in the contract between NESCSO and BHDDH.

The contract says supplemental payments have been used to “address the deficiency in the payment rates.” These supplemental payments “are an increasing portion of overall payments, reflecting the inadequacy of the current rates,” the contract said.

It says BHDDDH is seeking technical assistance from NESCSO in reviewing the best strategies for achieving an integrated, individualized system of services that complies with both the consent decree and the Medicaid Home and Community-Based Services Final Rule.

The consent decree affects daytime services, with an emphasis on competitive employment for adults with developmental disabilities.

The Home and Community-Based Final Rule (HCBS) is Medicaid’s interpretation of what the ADA’s integration mandate should look like in practice. Unlike the consent decree, it addresses residential services, calling for options that enable clients to live in less restrictive settings than group homes.

BHDDH also asks NESCSO to help it develop an “optimal and balanced system of services and payments” that will promote individually-designed programs according to the preferences and direction of the consumers themselves.

As part of the overall picture, the design and oversight of individual service plans would be separated from funding and actual delivery of supports to protect the interests of consumers and comply with the HCBS Final Rule in so-called “conflict-free case management.”

The consent decree also calls for a separation between funding, case management, and delivery of services. Currently, BHDDH is responsible for both funding and case management.

The total contract, designed for an 18-month period, will cost nearly $1,366,000 in federal and state Medicaid funds. That sum includes the entire developmental disabilities project, a rate review for behavioral healthcare services, and technical assistance at Eleanor Slater Hospital in connection with developing outpatient services for patients.

A BHDDH spokeswoman said Feb. 28 that the amount to be spent in the current fiscal year on the developmental disabilities portion of the project, originally set at about $400,000, will be scaled back to $200,000, because the work did not begin as anticipated in January. The fiscal year ends June 30.

There is $500,000 budgeted for the developmental disabilities work in the fiscal year beginning July 1.

BHDDH director Rebecca Boss said the department “Is pleased to partner” with NESCSO.

“NESCSO offers BHDDH the expertise of the other New England states and brings a team with background in specialized population-based needs and solutions, financial expertise, analytical depth and knowledge of federal regulation, resources and compliance requirements,” she said.

NESCSO is a non-profit collaboration among the health and human services agencies of Rhode Island, Massachusetts, Connecticut, New Hampshire and Vermont and the University of Massachusetts Medical School. Through shared information and expertise, it works to promote policies and programs that will serve the needs of New England states in a cost-effective manner, according to its website.

State Sen. Louis DiPalma, D-Middletown, the chairman of special legislative commission studying Project Sustainability, said the review of the funding model will be “pivotal” in shaping the future of the private system of developmental disability services.

“I give the department (BHDDH) credit” for moving forward with the project, DiPalma said. NESCSO, led by a former Rhode Island Medicaid director, Elena Nicolella, is held in high regard, he said.

At the same time, DiPalma said it is imperative that the review of the funding structure begin immediately and be completed in time for Governor Gina Raimondo to submit her budget proposal to the General Assembly for the fiscal year beginning July 1, 2020.

Expert testimony already given to the Project Sustainability commission made it clear that a review of the funding structure was long overdue, DiPalma said. With BHDDH already taking that step, the commission might still say that a rate review should be conducted every five years, as recommended by healthcare consultant Mark Podrazik.

Podrazik is a principal in Burns & Associates, which was hired to help BHDDH develop Project Sustainability. Testifying in November, he made it clear that the state ignored some of the firm’s key recommendations, instead shaping the funding structure through a frenzy to control costs.

DiPalma: RI DD Services Need More Than $18 Million To Continue Consent Decree Reforms

By Gina Macris

One of the Rhode Island Senate’s chief advocates for adults with developmental disabilities applauded the House and Senate consensus on restoring $18.4 million to reimbursements for private service providers but said that amount is not enough to enable the state to continue transforming its programs to comply with the Americans With Disabilities Act.

Reacting to the latest positive revenue estimates, Sen. Louis DiPalma, D-Middletown, said May 11 that reversing a cut planned by Governor Gina Raimondo for the fiscal year beginning July 1 would be a “phenomenal step forward.” 

But DiPalma, who has closely followed developmental disability issues, said he hopes the General Assembly can find additional funds so that the state can continue to invest in the goals of a 2014 civil rights federal consent decree and also, for a third consecutive year,  raise wages for direct care workers who provide services to adults with developmental disabilities. 

Restoring $18.4 million to private providers, and an additional $3 million to a state-run network of group homes, would bring the developmental disabilities budget to about $272.2 million. That reflects the pace of spending for the current fiscal year.

DiPalma said developmental disabilities will need about $275 million to $280 million in federal and state Medicaid funding during the next fiscal year to continue the decade-long transformation of services from a segregated to an integrated model, as mandated by 2014 consent decree with the U.S. Department of Justice. 

DiPalma’s remarks came the day after the state Revenue Estimating Conference concluded May 10 that revenues for the next 14 months are expected to run a total of nearly $135 million ahead of estimates made in November.  That total includes an additional $75.5 million for the fiscal year ending June 30 and another $59.4 million in Fiscal 2019, which begins July 1.

The $18.4 million gap in reimbursements to private providers for Fiscal 2019 refers tMo both federal and state Medicaid funds, with the federal government providing roughly 52 cents on the dollar.  That means the state would have to put up about $9 million to close the $18.4 million hole.

House Speaker Nicholas A. Mattiello and the President of the Senate, Dominick J. Ruggerio, issued separate statements saying they were pleased that revenues exceeded prior estimates. In recent days, they also have listed developmental disabilities as one of the priorities that must be addressed, although neither viewed the extra cash as a panacea, because of multiple unmet demands on the state budget. 

Mattiello’s statement said, “This offers some more options for us as we consider some very tough choices in our budget deliberations. I am committed to making sure we pass a responsible budget that addresses the critical needs of our citizens and continues to move the state forward.”

In addition, on May 11, he said the House “always” planned to address the $18.4 million gap between current spending for developmental disabilities and the governor’s proposal for the budget cycle beginning July 1.

Ruggerio, the Senate president, said, “As we work together to craft a responsible budget, it is important to consider that a significant portion of this increase is one-time revenue that may not continue in future years, and that there are significant gaps in the current budget proposal that need to be filled. However, the additional revenue does provide some flexibility to address Senate priorities such as funding for developmental disabilities care within the BHDDH budget and funding for DCYF.” Ruggerio referred to the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, and to the Department of Children, Youth and Families.

While adequate funding is the most immediate issue, there are other regulatory matters that concern a federal court monitor and the BHDDH administration. The Senate has signaled it is open to change, both in the short term and the long run.

In a brief telephone interview May 11, Mattiello said he, too, is open to considering changes, although he did not get  into specifics.

“I know the needs are significant,” he said. “I’ve got constituents in the community that have developmentally challenged family members. These folks need help, and I’m very, very available to that.”

“I’m open to study and to doing things better,” Mattiello said. “The department (BHDDH) and the administration certainly can do things better.”

“These are complex issues,” Mattiello said.

The Senate has passed a resolution authorizing a 19-member commission to study the fee-for-service reimbursement structure, with a report due March 1, 2019.

In addition, the Senate Committee on Health and Human Services is to vote May 15 on a bill to change the timing of individual funding authorizations for developmental disability services from quarterly to an annual basis.

An independent federal court monitor in the consent decree case, administrators at BHDDH, and private service providers all have found the quarterly authorizations problematic for a variety of reasons.

Providers have said the quarterly authorization system does not allow them to do any long-range budgeting. Anecdotal accounts of families unable to find services indicate a tendency in recent years for providers to avoid taking on clients with complex and costly needs for fear of financial risk that they may not be to cover.

Meanwhile, the Director of Developmental Disabilities testified at a recent Senate Finance Committee meeting that quarterly authorizations are administratively burdensome. The 3700 individual authorizations in the division’s caseload must be entered manually in the state reimbursement system four times a year, said the director, Kerri Zanchi. 

At the same time, DiPalma, the first vice chairman of the Senate Finance Committee, noticed that in some years there are significant dips in the caseload numbers in April and October – as many as 145 or 150.  This timing coincides with the governor’s budget preparation process in the fall and the legislature’s refinement of the final figures in the spring.  In general, each client represents an average of $60,000 in federal-state Medicaid funding. 

One reason for that variability might be data entry errors, according to Donna Martin, executive director of the Community Provider Network of Rhode Island, a trade association of service providers.

The bill requiring annual authorizations says they are necessary to allow adults with developmental disabilities to plan their services in a “flexible manner consistent with their stated goals and plan of care,” in accordance with the principles of the Centers for Medicare and Medicaid Services and the Home and Community Based Services Final Rule. Among other things, the Final Rule requires service plans to be based on an individual’s needs and preferences.

The bill would not preclude the state from changing reimbursement rates to providers in the middle of a fiscal year, but they and their clients would have to receive 45 days’ notice.

RI DD Officials "Trying To Do The Right Thing," Says Judge In Review of 2014 Olmstead Consent Decree

By Gina Macris

Rhode Island’s efforts to implement a 2014 consent decree to help adults with developmental disabilities become part of their communities won plaudits from a federal judge July 28, althougth some officials indicated there’s still a long way before the changes permeate the system of state services. 

Judge John J. McConnell, Jr. said he is heartened “when a state entity is trying to do the right thing. It’s not the case where the state is acting in any way in bad faith.”

“Compared to about a year ago we are in a very different place,” he said.

In May, 2016, McConnell issued a 8-page order warning the state he would entertain contempt proceedings unless it moved forward with implementation of the consent decree, which at that time had been stalled for two years.

At the latest hearing, July 28, McConnell said there had been “positive movement” in the state’s efforts to carry out the requirements of the consent decree and urged state officials to “keep it up.” 

The judge acknowledged that sweeping changes in the leadership of state agencies responsible for the disabilities programs in recent months had left him feeling “quite nervous” about the state’s ability to comply with his orders, but he said “now it doesn’t feel that way at all.”

McConnell chose a relatively informal setting for the hearing, convening his review not in his courtroom but in the richly paneled library of the Beaux Arts federal building on Kennedy Plaza in Providence, and inviting participants around a conference table to remove their jackets.

A lawyer for the U.S. Department of Justice, Nicole Kovite Zeitler, and an independent court monitor, Charles Moseley, cited advances in the handling of bureaucratic issues that are pre-requisites for a turn-around in the system that will take years to accomplish. The areas they covered included:

• The realignment of social work staff to better oversee changes in the way services are delivered
• Additional steps intended to lay the foundation for an active, multi-faceted quality improvement effort involving the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Office of Rehabilitation Services (ORS)
• Improved communication with service providers, and with the publicThe expanded availability of training and information on the principles of individualized planning and personal choice that are at the heart of the consent decree – and the federal law behind it.

There were, however, signs that, for some individuals who depend on developmental disability services, change has not yet arrived.

For example, Zeitler said that of 22 private agencies participating in a pilot program to encourage job-placements, 42 percent –nearly half - say they can’t take new clients.

Moseley said he “regularly” gets reports from families who say that they have been turned down by service providers they sought out.

Although the pilot project in supported employment is billed as an “incentive” program, participating agencies report privately they operate at a loss for each client they place in a job.

The legislature allocated $6.8 million for supported employment in the fiscal year which ended June 30, but the pilot program did not begin operations until January, and in the first six months it paid out a total of about $122,000 to participating agencies, according to BHDDH calculations obtained by Developmental Disability News.

Rebecca Boss, the BHDDH director, acknowledged there are “challenges” to delivering those supported employment services but did not elaborate. A report from Moseley to the judge submitted the day before the hearing said there have been multiple meetings between state officials and the providers to discuss various factors affecting the supported employment program, including “operational issues that are reported to be impeding the ability of the organizations to meet their placement goals.”

McConnelland the consent decree officials at the table spent considerable time discussing a relatively low employment rate of young adults – the very group most likely to have had the broadest experiences in high school, including school-to work internships. 

The participants acknowledged that the employment rate for that group, 32 percent, was artificially depressed, because the number of individuals in the young adult category has grown dramatically, from 151 to 497, in the last nine months.  It takes time to find the right job, Zeitler said. 

But the monitor said in his latest report to the judge that progress in finding jobs for young adults “has been slow.”  Even if one analyzes only the original 151 young adults and discounts 60 of them who are not receiving BHDDH services, the employment rate is 51 percent, Moseley said in the report.

He recommended that the state contact each of the 60 not receiving services to make sure they know that supports are available if they need them.

Clients recently interviewed by Zeitler and DOJ colleagues said they were sometimes “bored” with their daytime non-work activities, Zeitler reported. The Americans With Disabilities Act (ADA) says persons who receive public supports must have personal choice in deciding what they do with their time, both for work and leisure.

But the way resources are currently invested does not necessarily promote “inclusivity,” noted Boss, saying the department is hoping to do some “rebalancing” of the way money is spent.

The individual choice mandated in the consent decree implies one-to-one or small group staffing, assuming that a few friends want to do something together in the community. But a fairly rigid regulatory structure currently in place doesn’t allow for such staffing unless clients are deemed to have extensive disabilities.  

The Division of Developmental l Disabilities is in the process of rewriting all its regulations to change from a system that assigns funding based on the severity of a disability to one that stresses individualization and personal choice, or“person-centered planning,” in accordance with the ADA and the consent decree.

As Moseley noted, the state must make these changes anyway to comply with the broader federal Medicaid Home and Community Based Rule (HCBS). The federal-state Medicaid program pays for all developmental disability services in Rhode Island.

Like the consent decree, HCBS derives its authority from the 1999 Olmstead decision of the U.S. Supreme Court. The Olmstead decision re-affirmed Title II of the ADA, which emphasizes its primary purpose to integrate those with disabilities into the mainstream of society and respects their individual choices on the degree to which they wish to participate. 

The last time BHDDH attempted regulatory reform along similar lines, in 2015, an internal BHDDH work group came up with recommendations that would have cost tens of millions of dollars. The proposed changes did not move forward.  

In his most recent report to the judge,  Moseley said that the effort to gain greater flexibility over existing funding “is a positive move, but additional steps need to be taken to map out a process for ensuring that funding supports integrated person-centered day services” that meet the standards of the consent decree.

Zeitler said management officials of direct service agencies seem to understand the principles of individualized, or “person-centered” activity plans, but some direct care workers “don’t speak the language.” 

Zeitler suggested that more training is in order.  Although the training is available, tuition-free, Kerri Zanchi, developmental disabilities chief at BHDDH,  indicated there was no “quick fix” to this problem, given the high turnover in the workforce.

Zeitler, meanwhile, praised the way Zanchi has moved around staff to make the most of available personnel, calling the reorganization “very creative.”  

Zanchi has added four workers to the case management unit, reducing caseloads from 205 to 152 per person. Two of the workers came from the unit that determines eligibility for services and two came from a separate group that assesses the support needs of clients once they are found eligible for services. 

Another worker has been tapped to serve in the newly created position of transition coordinator, to serve teenagers and young adults moving from high school to adult services. The Division of Developmental Disabilities has hired a new residential coordinator to address housing options for those who do not live with their families.

An outside quality improvement expert enlisted by Moseley has said in a report that "there is a significant commitment to change" at BHDDH and ORS to ensure high program standards are implemented across the board. 

"But the staff available to implement change are stretched very thin," wrote Gail Grossman in a report that is part of Moseley's latest filing with the court. Grossman continued: "Serious consideration needs to be given to the need for additional staff resources if DDD (the Division of Developmental Disabilities) and BHDDH are going to develop, manage and oversee a strong QMIS (Quality Management and Improvement System) structure."

BHDDH has a unit entitled quality improvement, but its scope is limited to investigations of neglect or abuse of vulnerable individuals.

Click here for the monitor's latest report to the judge.

Related articles: Judge Willing To Intervene In RI Budget Impasse

Supported Employment Program Falls Short Of Initial Goals in RI

Public Forum on DD Services in RI Scheduled For Nov. 9 at Cherry Hill Manor in Johnston

By Gina Macris

Rhode Island officials will explain continuing changes in the state's developmental disability service system during a public forum Wednesday, Nov. 9, from 4 to 6 p.m. at the Cherry Hill Manor Nursing and Rehab Center, 2 Cherry Hill Road, Johnston.

The meeting will include updates on the search for a director of the Division of Developmental Disabilities as well as details of efforts to implement provisions of a federal consent decree calling on the state to end segregated daytime services that violate the Americans with Disabilities Act.

In addition, state officials will describe technical assistance the state receives from the National Association of State Directors of Developmental Disabilities Services (NASDDDS). The state has asked the organization for guidance in implementing a shift to community-based services, with an emphasis on supported employment, as required by the consent decree.

The application process for adult developmental disability services and the assessment used to assign individual funding to those found eligible also will be reviewed, according to an announcement from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Individuals who need interpreter services for the hearing impaired or need other accommodations for the meeting are asked to call Emily Limoges at 401.462.3405 or email her at Emily.Limoges@bhddh.ri.gov before Monday, November 7th.

Consumers and their families will have an opportunity to ask questions at the meeting.  The forum, the third to be held this year, represents part of the state's promise to the U.S. District Court, the U.S. Department of Justice, and an independent court monitor to improve communications with the public about the consent decree. BHDDH officials also will give an overview of the department's recently-revamped website at the meeting.

In the meantime, the Division of Developmental Disabilities has released contact information for those who wish to call or email the division directly concerning service-related issues.  

• For funding authorizations, call Donna Phillips at 401-462-1833 or email her at Donna.Phillips@bhddh.ri.gov

• For transportation issues, call Deborah Mazzone at 401-462-3231 or email her at Deborah.Mazzone@bhddh.ri.gov

• For social services, call Heather Mincey at 401-462-3421 or email her at Heather.Mincey@bhddh.ri.gov

• For employment, call Tracey Cunningham at 462-3857 or email her at Tracey.Cunningham@bhddh.ri.gov

Monitor Gives RI Mostly Passing Grades, Except for Failure to Pay Bills

By Gina Macris

Update: At the close of business July 26, all nine developmental disability service providers owed money for start-up costs in converting from sheltered workshops to supported employment had received payment in full, according to a spokeswoman for the Rhode Island Executive Office of Health and Human Services. A list of the agencies and the amounts appear at the end of this post.

With one exception, the state of Rhode Island largely has met the latest deadlines of a federal court order which spells out how it must lay the groundwork for long overdue compliance with a 2014 consent decree meant to desegregate adults with intellectual and developmental disabilities.

The state has until Friday, July 29, to pay up to $800,000 in start-up costs, as specified in the consent decree, for nine private service providers converting to community-based services from sheltered workshops, according to the court monitor in the case, Charles Moseley.

If that deadline is not met, Mosely said in a new report to U.S. District Court Judge John J. McConnell, Jr., the judge should impose fines of $5,000 a day, with an additional $100 per day for each person protected by the consent decree whose employment or integrated day services are delayed or interrupted as a result of the violation.

Those fines, with a maximum of $1 million per year, were set forth in the order McConnell issued May 18.  It is the second time in three months that the state has faced the prospect of fines for failing to pay its bills in relation to implementing the consent decree.

Moseley said he had received assurances from Jennifer Wood,  the Deputy Secretary for Health and Human Services, Jennifer Wood, that the Friday deadline will be met.

The plans for converting sheltered workshop operations to integrated employment services had been approved by the state and the bills for start-up costs had been submitted by the agencies at least three months ago.

The start-up activities are necessary to enable the service providers to meet employment targets in the consent decree. Moseley noted, adding that this point was made during April 8 evidentiary hearing, which McConnell used as the basis for his order, issued May 18.

According to an investigation of the U.S. Department of Justice, the sheltered workshops violate Title II of the Americans with Disabilities Act, which says, in effect, that individuals with intellectual or developmental disabilities cannot be relegated to segregated settings simply because they are disabled.

In the 2014 consent decree, the state agreed to change its services to emphasize integrated employment paying minimum wage or higher and other community-based activities over a ten-year period.

Moseley’s most recent status report was submitted to the court last Friday, July 22.

In it, he said that the budget enacted by the General Assembly, a total of $246.2 million for developmental disabilities, will provide sufficient funding to meet requirements of the consent decree during the current fiscal year, which ends June 30, 2017.

The budget is still a little more than $11 million more than Raimondo had originally requested.

Budget provisions specifically related to the consent decree include:  

• A total of $9.1 million for wage increases and performance-based contracts for providers offering integrated employment supports.

• Funding for four state (staff) positions focused on consent decree implementation, including chief transformation officer, consent decree coordinator, employment specialist, and program development director.

Although the General Assembly did not approve Raimondo’s request for $5.8 million for a caseload increase, citing flat enrollment, Moseley noted that the legislature left the door open to reconsider if the numbers changed.

The monitor said 125 new cases had been approved during the fiscal year which ended June 30, although most of them were still in high school and were not expected to need a full array of adult services during the coming fiscal year. (According to the state's report, these cases encompassed ages 17 to 24.) 

Mosely did ask the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to report to him on any individuals protected by the consent decree “whose acceptance into the adult DD system is delayed or deferred due to lack of funding.”

McConnell’s order required the state to develop a management plan for accomplishing consent decree goals and tasks, and while Moseley said the plan met basic criteria, he found it lacking in detail on organizational strategies within BHDDH  and on interagency cooperation.

The lack of specificity is “understandable,” he said, given that three key positions at BHDDH are vacant. They are the department director, the director of the division of developmental disabilities and the chief transformation officer.

Moseley recommended that the state have until December 1 to expand and strengthen the management plan.

Other comments in Moseley’s status report focused on high school students with developmental disabilities who are 14 years and older and of particular concern to federal officials because they are at risk for segregation as adults if they are not afforded transitional services.

He secured a commitment that state employees from BHDDH or from the state Office of Rehabilitation Services in the Department of Human Services would be available to attend all Individual Education Plan meetings for special education students with developmental disabilities who are at least 14 years old.

Moseley noted that BHDDH has developed a protocol for timely communications with individuals having developmental disabilities and their families concerning applications for adult services.

He also recommended that BHDDH develop and distribute a description of the process for determining eligibility that is “clear, easy to access, user-friendly and written in plain language,” including contact information for BHDDH employees who would be able to answer additional questions.

“It is important to note that the eligibility determination process frequently is associated with a great deal of anxiety and concern among individuals with disabilities and their families,” Moseley said.

“By its nature, the process is technical, complicated, and difficult for a lay person to understand. Direct contact with an eligibility determination staff member offers an important opportunity for famelies to learn about the process and have their questions answered,” he said. 

Click here to read the monitor's full report

Service providers that received start-up costs for supported employment, as required by the monitor 

ri executive office of health and human services

Task Force Members Say Interviews to Assess DD Needs in RI Apparently Used to Cut Funds

By Gina Macris

Four Rhode Islanders with developmental disabilities who all need nearly constant attention have had their residential funding cut by a total of about $125,000 a year.

The most recent scoring on an extensive questionnaire that is supposed to assess their support needs says they have become much more self-sufficient. Instead of having extensive needs, they now require only moderate supports, according to the results of the questionnaire, the Supports Intensity Scale, or SIS. 

But Tom Kane, the CEO of the agency that runs the men’s group home, says that if he withdraws $125,000 worth of residential staff hours for these men, “someone will get hurt.” 

“It’s not a position these four men should be in, nor should the agency be in this position,” Kane told state officials at a meeting of the Employment First Task Force July 12. 

Professionals acknowledge that, barring a traumatic event, the needs of a person with intellectual or developmental disabilities remain relatively stable over the course of a lifetime. 

Yet one chart prepared in 2015 by a healthcare consulting company under contract with the state shows the level of need changed for 47 percent of clients who had been re-assessed since the Supports Intensity Scale was introduced in 2011. 

For AccessPoint RI, a private service provider, those changes have resulted in a cumulative loss of $970.000 in developmental disability funding, roughly 12 percent of the budget, Kane said. 

If the tool is reliable, the score shouldn’t change dramatically,” Kane said. “Either the tool is not reliable, or you know it was all manipulated” to reduce pressure on state spending, he said.

Jane Gallivan, the interim Director of Developmental Disabilities in the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, said, “We definitely will take a hard look.”

Claire Rosenbaum, Adult Services Coordinator for the Sherlock Center on Disabilities at Rhode Island College, said she has received numerous reports that social workers conducting the SIS interviews challenge the accuracy of answers family members give to specific questions. 

Or, said Mary Beth Cournoyer, a parent member of the Employment First Task Force, the interviewer does not argue with family members’ answers but merely substitutes other ones.  This becomes apparent, she said, when parents review the completed assessment and see that the ratings on needs differ from the ones they had given. 

Cournoyer said parents need training on what to expect from a SIS questionnaire because the answers they give could have unexpected ramifications.  

For example, parents may say that their sons or daughters can dress themselves, when the reality is much more nuanced. Without someone to put away the out-of-season clothes so they are out of reach, individuals with disabilities may dress inappropriately for the weather, she said. They may be capable of dressing themselves, but may sometimes refuse to do so.

Cournoyer indicated that parents don’t realize they need to completely remove from the picture the supports they and other family members provide naturally before they say whether their sons or daughters can perform a particular task. 

Jennifer Wood, the Deputy Secretary of Health and Human Services, said “no topic has come up with more regularity than the SIS. We should have some focus groups.”  

Under order of the U.S. District Court, and to avoid a possible contempt hearing, BHDDH changed its SIS policy July1 –nearly two years after it first agreed to do so -to divorce the assessment of need from funding considerations. 

That new language is intended to resolve a conflict of interest noted by the U.S. Department of Justice in its 2014 findings that the state’s sheltered workshops and segregated day programs violatedthe integration mandate of the Americans With Disabilities Act, The 1999 as spelled out by the  1999 Olmstead decision of the U.S. Supreme Court.  

In a subsequent consent decree designed to remedy the ADA violations, the state agreed to change its SIS policy by Sept. 1, 2014. 

The policy then in place said, in part: “Starting January 1, 2013 BHDDH will assign service tiers (funding allocations) based on the results of an individual SIS assessment. 

A year later, the DOJ said in its findings: 

“Our investigation revealed that BHDDH staff maintains primary responsibility for administering the Supports Intensity Scale, and they are also part of the agency that administers the statewide budget for developmental disability services.This is a seeming conflict of interest because 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  referred to similar warnings from the American Association on Intellectual and Developmental Disabilities, which created the SIS.   

The consent decree prohibits the SIS from being used as a funding mechanism.  

The new state policy, adopted July 1, reads, in part: “All decisions involving SIS tier assignments (levels of need) and any changes to SIS tier assignments are made solely on the basis of individual support needs as indicated by the SIS assessment in a manner that is consistent with individual’s support needs, separate and apart from resource allocation considerations.” 

How the change in policy will play out in practice is not yet clear.

According to a monitor’s report to the court in August, 2015, the state reported making the necessary changes in the administration of the questionnaire, including the re-training of interviewers, but complaints from parents have persisted. 

The disagreements over the SIS have resulted in families filing appeals. Most appeals are granted, according to Charles Williams, who retires as Director of Developmental Disabilities July 22. Data on the number of appeals, successful or otherwise, is not readily available. 

Wood and Gallivan promised members of the Employment First Task Force they would get to the bottom of the issue.                               

The Employment First Task Force, created by the consent decree, consists of members representing community organizations, adults who themselves have disabilities, and parents.   The task force, which holds public meetings, is intended to serve as a bridge between state government and consumers and families. 

The next meeting is August 12 at 2 p.m. at the Community Provider Network of Rhode Island, 110 Jefferson Blvd., Warwick.

RI House Finance Chairman Asks Whether DD Services Really Need Money; Gets Emphatic Yes in Reply

Maureen Gaynor uses assistive technology to testify before the Rhode Island House Finance Committee May 26. She says people with disabilities want the same thing everyone else does; a job, a role in their communities, and purpose in their lives. To her left is Lisa Rafferty, executive director of Bridges, a disability service provider.

By Gina Macris

Rhode Island’s developmental disability agency needs more revenue in the next fiscal year because it will not come close to saving a target of $16.2 million in group home expenses, the agency’s director, Maria Montanaro, told the House Finance Committee in a hearing May 26.

Montanaro emphasized that after eight years of cost-cutting in the developmental disability budget, the state now needs to add revenue to ensure that Rhode Island residents who live with intellectual challenges get the Medicaid-funded services to which they are entitled by law.

The Committee chairman, Rep Marvin L. Abney, (D-Newport), wasn’t necessarily convinced by Montanaro’s testimony, asking rhetorically, “Is money really the problem?” 

ABNEY                                          Image by Capitol TV

“We’re going on and on and on and on,” Abney said. “I’ll leave you with this thought. It’s not a question, but we are concerned,  is money really the problem? When we’re talking about efficiencies to the system, is money always the answer to that? You don’t need to respond, but just think of that as a director,” he said.

Montanaro did not reply, but other witnesses did say a lack of money is a key factor in ongoing federal court oversight of the state’s compliance with a two-year-old consent degree in which Rhode Island agreed to bring its disabilities services in line with the Americans With Disabilities At (ADA).

The agreement, with the U.S. Department of Justice, requires the state to enable more persons with disabilities to work in regular jobs, rather than in “sheltered workshops.” The decree also requires the state to help persons with disabilities participate in other community-based activities.

In an order issued May 18, Judge John J. McConnell, Jr. laid out 22 short-term deadlines the state must meet. Missing even one of them could trigger a contempt of court hearing. If the state is found in contempt, the judge would require the state to pay a minimum of $1,000 a day for violations of the consent decree, or as much as $1 million a year.  

The first requirement in McConnell’s order is that “the State will appropriate the additional money contained in the Governor’s budget for fiscal 2017 in order to fund compliance with the Consent Decree.”

The subject of the House Finance Committee’s hearing was Governor Gina Raimondo’s proposed budget amendments for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH),  for 2016-2017 fiscal year, which begins July 1.

In all, Raimondo has requested $18.7 million in added revenue for developmental disabilities, offset by an accounting shift of $1.8 million in home health aide services from BHDDH to the Executive Office of Health and Human Services.

Also on the table is a proposal for about $6.8 million in additional appropriations in the current fiscal year to address a current budget deficit in developmental disabilities. 

If the General Assembly approves the supplemental appropriation, the bottom line in BHDDH’s Division of Developmental Disabilities would increase from $230.9 million to $237.7 million before June 30. Raimondo’s request for an additional $16.9 million in the coming fiscal year would push the overall disabilities budget up to $254.6 million, with about half that amount coming from state coffers. 

In fiscal 2016-2017, Raimondo seeks to make up $10.2 million of the $16.2 million she originally envisioned saving in reduced group home costs.

The governor also wants an additional $9.2 million in funding to raise salaries for staff who work with adults with intellectual challenges, or $4.1 million more than she asked for in February. 

In addition:

• $180,000 would be set aside for an ombudsperson to protect the rights of persons with developmental disabilities

• ·4.4 million would be restored to the BHDDH budget to prevent the inadvertent loss of professional services like occupational and physical therapy for some persons with developmental disabilities.

All the money comes from Medicaid, with a roughly dollar-for-dollar match in federal and state spending.

Montanaro, the BHDDH director, said adequate funding of developmental disabilities in the next budget would prevent BHDDH from running a deficit every year.

The developmental disability caseload, 4,000 to 4200 annually, also should be included in calculations of the state’s semi-annual Revenue and Caseload Estimating Conference to prevent unexpected surprises in the budget, she said. 

Montanaro                                                               Image by Capitol TV

The twice-yearly conference is a forum for top fiscal advisors to the Governor, the House and the Senate to reach consensus on the state’s revenues and Medicaid caseload expenses for the coming budget year.  

Montanaro said the $9.1 million in raises for direct care workers are necessary to satisfy the consent decree.

Without being able to offer higher pay, the private agencies that provide most of the direct services won’t be able to re-direct their efforts toward supporting their clients in jobs as the consent decree requires, Montanaro explained.

Workers make an average of about $11.50 an hour, often less than the clients they support in jobs in fast food restaurants, according to testimony at the hearing.

BHDDH originally counted on achieving $16.2 million in savings in the next fiscal year by convincing hundreds of group home residents to move into less expensive shared living arrangements with individual families, Montanaro said.

However, that effort has encountered resistance by individuals and families who find safety and security in group home living, she said.

Since BHDDH began what Montanaro described as a “full court press” on shared living at the beginning of this year, 10 group home residents have moved into private homes with host families, according to BHDDH statistics.

There are now 288 adults with developmental disabilities in shared living – an option that has been available for a decade in Rhode Island – and about 1300 persons living in group homes in Rhode Island.

Tobon                                                           Image by Capitol TV 

When Montanaro originally testified in January about the plan to shift to shared living, it was in the context of closing a projected $6 million deficit in the current fiscal year.

Recalling that testimony, Rep. Carlos E. Tobon, (D-Pawtucket), a Finance Committee member, said he had been “really concerned” about the timetable.

“You had to sit over there and pretty much, not  convince us, but tell us that this is what you were going to do,” Tobon said. “What was your confidence in actually achieving that?”

“I think I was very clear with the committee that it was a very aggressive approach,” Montanaro replied.

“But the problem, Representative, that I want you to understand, is that we are mandated by (state) law to come up with a corrective action plan” to close a budget deficit, she said.

The choice was either to continue the eight-year pattern of cutting benefits or eligibility, while the federal court watched “the crumbling of that system,” Montanaro said, or to try to get savings by encouraging persons with disabilities to move into more integrated living arrangements.

Montanaro described it as a “Sophie’s Choice,” a dramatic allusion to a forced decision being forced to decide between two terrible options.

 “We knew we might have to come back and tell you our actual experience with that,” she said alluding to the fact that the short-term shared living effort has fallen far short of the goal.

 A gradual shift toward shared living is in keeping with a broad, long-range federal mandate to desegregate services for individuals with a variety of disabilities, but it does not address the Rhode Island consent decree, Montanaro said.

 
In the past several months, as the federal court watched BHDDH spending nearly all its efforts to try to save more money instead of working on the employment requirements of the consent decree, Montanaro said, the judge and the court monitor in the case became “very worried.”

The monitor, Charles Moseley, has said that timing is critical.

Unless the state meets certain benchmarks now, Moseley has said in reports to the court, it will not be able to fulfill the long-range requirements of the consent decree, which calls for a ten-year, system-wide shift from segregated to integrated day time supports for adults with developmental disabilities to comply with the ADA. The decree, signed April 8, 2014, expires Jan. 1, 2024. 

Montanaro said that concerns of the monitor and the judge over the state’s emphasis on cost-cutting instead of the consent decree requirements prompted a recent court order that spells out conditions under which Rhode Island could be fined as much as $1 million this year for contempt. 

In her testimony before the House Finance Committee, Montanaro drove home her point.

“The last thing I’ll say about it is that we really can’t afford to direct all of our departmental activity toward an effort that isn’t actually the effort that the consent decree is obligating us to pay the most close attention to, which is the employment issue,” Montanaro said.

“Judge McConnell and the court monitor want to see the state of Rhode Island make the necessary financial investments in transforming the system, and you can’t transform everything at once,” she said, alluding to Moseley’s concerns about timing.

Montanaro continued to explain, but that’s when Abney, the committee chairman, interrupted, asking his rhetorical question: “Is money really the problem?” 

Later in a hearing that lasted nearly two hours, Tom Kane, CEO of a private service agency, and Kevin Nerney, associate director of the Rhode Island Developmental Disabilities Council, each told Abney that “it is about the money.”

Nerney said, “Whether I think it’s about money, or whether anyone else thinks it’s about money, there’s a federal court judge that thinks it’s about money, and the Department of Justice does, as well.”

Kane, CEO of AccessPoint RI, said “The reason the DOJ is here is a money problem,” he said. “We have jobs available for people (with disabilities) waiting to work,” he said, but providers of developmental disability services can’t hire the support staff “to make that happen,” he said.

Of 77 job applicants at AccessPoint RI during the month of April, 35 refused a job offer because of the low pay, Kane said. “They tell me they can make more sitting home collecting” unemployment benefits, he said.

Serpa                                                  Image by RI Capitol TV 

As he has testified at previous State House hearings on the developmental disabilities budget, Kane said private service providers operate at an average loss of about $5,000 a year for each person they employ. 

Rep. Patricia A. Serpa, (D-West Warwick, Coventry and Warwick), asked whether executives of developmental disability agencies have received raises while their workers have been paid low wages in recent years.

Kane said he gave all AccessPoint RI employees a 3 percent raise in January, the first time since 2006. At the start of the 2011-2012 fiscal year, after the General Assembly voted to cut $24 million from the developmental disabilities budget, everyone took a 7.5 percent pay cut, he said.

Donna Martin, executive director of the Community Provider Network of Rhode Island, CPNRI, said all the member agencies that cut pay that year started at the top.

A review of IRS reports from organizations exempt from taxes shows that executives of developmental disability agencies with budgets less than $5 million make 25 percent less than those of other non-profit agencies in Rhode Island, Martin said.

In developmental disability agencies with budgets greater than $5 million, the executives make 30 percent less than those of other non-profit organizations in the state, she said.

Kane, meanwhile, asked the committee to think of the governor’s budget proposal as a “jobs request.”

KanE                                                    ImAge by Capitol TV 

Kane submitted a copy of research done by the University of Massachusetts Amherst which indicates that every million dollars invested in disability services in Rhode Island creates a total of 25 jobs. Based on that research, Kane said later, the $9 million Raimondo has requested to raise pay for direct care workers would translate into a total of 225 jobs.

Kane also said the state should “braid” funding from BHDDH with the Office of Rehabilitation Services of the state Department of Human Services (ORS) to fund “employment teams” that would be more effective than the two agencies working separately to try to do the same thing.

That idea came out of recent discussions between state officials and private agencies about a system-wide redesign of services, Kane said.

Bob Cooper, executive secretary of the Governor’s Commission on Disabilities, said he would add the state Department of Labor and Training (DLT) as another “braid” in Kane’s analogy.

Federal rehabilitation dollars channeled through DLT reimburse the state 78 cents for every dollar the state spends; a better deal than the 50-50 match from the Medicaid program, he said.

The federally-funded Disability Employment Initiative, a workforce development demonstration grant run by DLT, “was making a difference” before the grant ended and the program shut down March 30, Cooper said.

If the state is to comply with the consent decree, disability-related job supports involving BHDDH and ORS must be merged with DLT, the state’s primary economic development agency, Cooper said.

RI Governor's New Request for More DD Funding To Go Before House Finance Committee Thursday

By Gina Macris

Rhode Island Governor Gina Raimondo has proposed adding nearly $16.9 million in state and federal revenue funds during the next fiscal year to shore up the state’s developmental disability system, which is under a federal court order to expand participation of adults with intellectual challenges in work and leisure activities in their communities to comply with the Americans With Disabilities Act (ADA). 

The addition of these funds, in four disability-related categories, will be heard by the House Finance Committee May 26, along with dozens of other proposed amendments Raimondo submitted in light of positive revenue estimates made a few weeks ago by state fiscal analysts. 

The new revenue reflects a change in the Governor’s approach to budgeting for developmental disability reforms, which originally depended on cost-shifting within the Division of Disabilities in the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The disability-related amendments are:

•  An additional $4 million - about equally divided between state and federal funds – to raise the wages of some 4,000 direct care workers for private agencies that provide most of the services to adults with developmental disabilities. The amendment would raise the total allocation for worker raises from $5 million to $9 million.

• A $10 million increase in reimbursements to private providers, including $5 million in additional state revenue, to restore most of the cuts in housing costs made in the Governor’s original budget. That proposal projected 500 adults with developmental disabilities would move from group homes to shared living arrangements with individual families by June 30, 2017, although those estimates were later lowered to 300.  A total of 21 individuals have moved during the current fiscal year, according to the latest figures released by BHDDH. The added revenue will enable BHDDH to take a “more appropriate, more deliberative approach to transition individuals from group homes to shared living arrangements” in the future, according to Michael Raia, a spokesman for the Executive Office of Health and Human Services.

• A total of $170,000 in state and federal funding for an ombudsman who would protect the rights of adults with developmental disabilities. Legislation has been introduced in both the House and Senate to define the office and its duties, in response to the death of a resident of a state-run group home in February.

• Restoration of $4.4 million in state and federal funds used to pay for professional services like physical therapy in day centers, In February, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) sought to shift the entire $2.2 million to Medicaid managed care organizations, but families complained that services had in fact been denied. The action was rescinded in March.

One of many provisions of a U.S. District Court order issued by Judge John J. McConnell, Jr. on May 18 is that “the State will appropriate the additional money contained in the Governor’s budget for fiscal year 2017 in order to fund compliance with the Consent Decree.” 

Any violation of that or any other requirement in the 21-point court order would allow the U.S. Department of Justice or the independent court monitor in the case to ask the judge for a contempt hearing. If the state is found in contempt, it will be fined a minimum of $5,000 a day for the duration of the violation, up to $1 million a year. 

In a telephone interview May 25, BHDDH director Maria Montanaro emphasized the need for the total $9 million Governor Raimondo has earmarked for wage hikes for direct care staff in the private service system, in addition to the other adjustments.  

Part of what the court wants is a redesign of reimbursement rates, which is more complicated than only raising wages, Montanaro said. The changes in reimbursement that the judge wants, however, can’t be accomplished without paying the workers more, she said. 

Raimondo’s budget originally envisioned an increase of $5 million in state and federal funds to pay for a 45-cent hourly wage increase for a workforce now making an average of roughly $11.50 an hour, according to testimony in recent House and Senate committee hearings. 

Montanaro could not say exactly how the additional $4 million in federal and state funds would further affect wages, but it would allow BHDDH management and agency representatives to discuss factors like the salaries of supervisors of direct care staff and the cost of employer taxes and benefits, she said. Those discussions would be held after the budget is adopted, she said. 

 Currently, private agencies are not fully reimbursed for those employer costs, spokesmen for the service providers have testified at recent budget hearings, and they operate at loss for each person they employ.  

Judge Says RI General Assembly Shares Responsibility for Implementing Decree

By Gina Macris

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

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

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

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

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

Wood said she would be sure to convey the message.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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