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.

Federal Judge Presses RI To Raise DD Worker Wages In Wake Of Severe Shortage Of Services

By Gina Macris

The U.S. District Court has put pressure on the state of Rhode Island to increase the pay of front-line workers who support adults with developmental disabilities in the budget beginning July 1, a year earlier than the disability service agency had planned.

Indeed, two human services officials have recommended that privately-employed front-line workers serving adults with developmental disabilities get $15 an hour – a hike of nearly $2 –in light of a new report that the post-pandemic workforce will fall far short of the number needed for complying with a 2014 civil rights decree.

On April 28, the day after hearing about the worker deficit, Chief Judge John J. McConnell, Jr. issued an order saying the rates must be “reasonably comparable” with those paid in the state’s own group home system and in neighboring Massachusetts and Connecticut.

Massachusetts and Connecticut pay $15.75 and $15.78, respectively.

The state pays its own group home workers an average of $18.46 an hour and sets rates for private providers that allow them to pay front-line employees an average of $13.18 – about five dollars less than the workers make in the state-run group homes, according to figures provided to McConnell.

Moreover, the budget now under consideration by the General Assembly assumes the private sector will absorb more than 100 residents of state-run group homes, without any rate increases.

COVID Exacerbated Worker Shortage

A report submitted to the court April 27 indicated private providers simply don’t have the staff to take on any new clients, let alone meet the demands of the 2014 consent decree by the time it expires in 2024.

The report, compiled by the same consultants the state used for a $1.1 million analysis completed last July, started with the premise that a “stable and skilled workforce is a necessary pre-condition” to implementing changes required by the consent decree.

The consultants concluded that at the end of 2020, the privately-operated system had 1,764 direct care workers, only 62 percent of the 2,845 full time employees it needed to ensure that adults with intellectual and developmental challenges have access to jobs and other activities in their communities, as required by the consent decree. That’s a gap of 1,081 full-time positions.

Currently, the system is staffed at 62 percent of the capacity it would have if all positions were filled, said the consultants. Except for those living in group homes, eligible adults at the end of 2020 generally received less than half the services they got before the pandemic. For those living in family homes, the reduction was calculated at 71 percent, according to the consultants.

The consultants previously worked for the New England States Consortium Systems Organization (NESCSO,) a non-profit regional organization under contract to the Department of Behavioral Healthcare, Developmental Disabilities and Hospital (BHDDH) to analyze the developmental disabilities system top-to-bottom – but provide no recommendations.

The latest report, presented to McConnell April 27, was commissioned by the Community Provider Network of Rhode Island, (CPNRI), a trade association.

CPNRI seeks an hourly rate of $17.50 an hour for front-line workers and proportional increases for supervisory and other personnel. CPNRI’s executive director, Tina Spears, told McConnell during the court hearing that the proposed $15 hourly rate would only address direct care worker pay.

The pay hike would cost nearly $26.9 million and would require legislative approval in the next two months if the change were to take effect in the budget beginning July 1.

Will The Governor Amend Budget Plan?

During the April 27 court hearing, an independent court monitor in the case, A. Anthony Antosh, said he understood a new budget article is to be drafted in early May.

Neither the office of Gov. Dan McKee nor BHDDH have responded to questions about any top-level support of a $26.9 million expenditure to raise worker pay or how they would fund it.

The Director of the Developmental Disabilities, Kevin Savage, was one of the two officials recommending the $15 hourly wage. The other was Kayleigh Fischer, Director of Budget and Finance at the Executive Office of Health and Human Services.

In January, McConnell raised eyebrows at the State House when he ordered the state to raise direct care wages to $20 an hour by 2024.

Both the House and Senate leadership withdrew their representatives from talks organized by the court monitor about consent decree reforms, which must be up and running by July 1, 2023, a year before consent decree is set to expire.

Instead, legislative spokesmen said at the time, the respective chambers would consider reforms in the context of the budget process.

But with only two months left until the start of the next fiscal year, that process has been silent on developmental disability reform.

McConnell Tightens The Reins

The apparent passivity of the legislative process, combined with the fresh data showing that non-compliance with the consent decree has accelerated during the pandemic, apparently prompted McConnell to tighten the reins in his oversight of the case.

He has been adamant that the state cannot meet the integration requirement at the heart of the consent decree without beginning implementation of a three-year plan in the next budget.

The current system, now ten years old, comes with a reimbursement system built on congregate care – a violation of the Integration Mandate of the Americans With Disabilities Act.

While BHDDH officials had said they wanted to tackle structural reforms first, McConnell’s latest order accepts the position of providers that they cannot get their clients into the community unless they first have an adequately paid, stable workforce.

Roughly one in three workers leave within a year, and one in five jobs goes begging, with the majority of supervisory staff frequently filling in for front-line workers, according to various reports.

McConnell’s latest order says the state must continue to meet in person or by teleconference with providers and at least one representative of families who direct their own programs to address the immediate fiscal and administrative issues in several court orders dating back to last July. The judge wants a progress report by the end of May, he said.

The annual state budget typically is finalized in early June for the next fiscal year, but McConnell said state officials should continue talking with providers and at least one family representative to prepare for the following two fiscal cycles leading up to the deadline for full compliance with the consent decree in 2024.

In addition, McConnell’s order said the developmental disability caseload should be part of the twice-yearly process the governor and the General Assembly use to determine public assistance obligations beginning in November of this year. He said he will continue to look at job turnover and vacancy rates, as well as client participation rates, to determine the effect of the wages on the system.

Governor McKee’s budget proposal would have the developmental disability caseload become part of the twice-yearly meeting, the “Caseload Estimating Conference,” in November, 2022.

The caseload and revenue-estimating conferences in May and November are considered critical tools in budget-planning.

Public Slams RI DD Funding Constraints

By Gina Macris

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

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

Rick Jacobsen * All Photos By Anne Peters

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

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

Claire Rosenbaum

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

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

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

Cliff Cabral

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

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

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

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

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

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

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

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

Sue Joinson

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

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

Dorie Carder

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

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

Connie and John Susa

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

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

The audience provided examples of the constraints:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

NESCSO Review of RI DD Reimbursement Won’t Generate Specific New Rate Recommendations

By Gina Macris

Elena Nicolella and Rick Jacobson All Photos By Anne Peters

The non-profit consortium hired to review the reimbursements Rhode Island pays private agencies serving adults with developmental disabilities will not produce a new set of recommended rates, its executive director said April 25.

Rather, consultants supervised by the consortium will review the impact of the existing system and present facts and data that will enable the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to make more informed policy decisions, based on available funding and other factors, said Elena Nicolella. She is executive director of NESCSO, the New England States Consortium Systems Organization.

Nicolella addressed a special legislative commission studying the current fee-for-service rate structure, called Project Sustainability.

DiPalma and Kelly Donovan, A Consumer Advocate

For more than an hour, the commission chairman, Sen. Louis DiPalma, D-Middletown, and other members of the panel peppered Nicolella and consultant Rick Jacobson with questions as they struggled to come up with a clearer idea of what NESCSO’s recommendations might look like.

The pair, aided by BHDDH officials, did flesh out the picture somewhat. But DiPalma, said Nicolella will be invited back in June to give an update on the work, which is underway.

“We will not be issuing recommendations on specific rates,” Nicolella said, explaining that is not within the scope of the work outlined in the contract between NESCSO and BHDDH.

The work will assess current rates quantitatively and qualitatively and analyze “the impact of the rate structure and payment methodology on people receiving services and the provider agencies and make recommendations for the future,” Nicolella said.

NESCSO will develop scenarios or “roadmaps” of what it would take for the state to achieve certain goals, putting the priority on the state’s obligation to meet the requirements of a 2014 civil rights consent decree with the federal government. That means the work will focus on day services and employment supports, at least initially, Nicolella said.

Some of the recommendations, however, will have implications for the entire system of services, she said.

Rebecca Boss, the BHDDH director, gave an example of one system-wide priority – creating a stable workforce.

She was asked after the meeting why BHDDH structured the work the way it did.

Boss reiterated that NESCSO would present “facts and data” in an analysis based on certain assumptions. She and Nicolella said the policy decisions would be up to BHDDH.

“If the decisions we make (at BHDDH) don’t meet expectations, it will be out there,” Boss said, emphasizing that the work will be transparent.

The assumption at the heart of Project Sustainability was that providers could do the same work with less money. A former BHDDH administration relayed that assumption to the General Assembly in an unsigned memo that contained a slew of reimbursement rate reductions that formed the basis for cuts enacted in 2011 to inaugurate Project Sustainability. The reductions averaged 17 percent.

Boss said “that’s not the kind of assumption we’re talking about.” Instead, the assumption for one analysis might be that industry-wide, providers should have health insurance for their employees, Boss said. Another assumption might be the amount it costs providers to cover employee-related overhead, she said.

In a separate conversation outside the meeting, Nicolella said the recommendations would be “driven by the data” and “not limited by the by the state budget.”

At the same time, NESCSO will “stop short of what was recommended last time,” she said, alluding to the specificity of rates proposed by Burns & Associates, healthcare consultants who worked on Project Sustainability.

In 2011, Burns & Associates recommended rates that would have paid entry-level workers nearly $14 an hour, but after the General Assembly cut $26 million from developmental disability funding, many workers ended up at minimum wage.

Since then, wages have increased only incrementally, resulting in high turnover and job vacancy. Providers say the reimbursement rates do not cover their actual employee-related costs, like payroll taxes, health insurance, and the like.

During the meeting, Nicolella assured a spokeswoman for providers that the rate review will look at the agencies’ figures. At least one agency, Spurwink RI, has laid out its gap in dollars and cents several times before the House Finance Committee.

At the commission meeting, Spurwink’s executive director, Regina Hayes, asked Nicolella and Jacobson whether the review would pay attention to compatibility with current law.

For example, she said, the Affordable Care Act requires employers to pay health insurance for workers who put in at least 30 hours a week. But Project Sustainability assumes that only those working 40 hours a week are entitled to health insurance, Hayes said.

Nicolella responded, “That’s exactly the kind of information we should be hearing right now, because it’s extremely helpful.”

She and Jacobson both said the assessment of the impact of the current system will include engagement with consumers and families,as well as providers. But neither of them could lay out a schedule or format for that type of engagement.

NESCSO is required to produce a series of reports for BHDDH between June and December, she said. It is the consortium’s intent to complete the work in time for BHDDH to make its budget request for the fiscal year beginning July 1, 2020, Nicolella said.

Nicolella explained that NESCSO’s only mission is to serve the New England states as they seek to research issues and solve problems in the fields of health and human services.

“We are not a consulting company. We don’t sell our services,” she said.

In this case, NESCSO is overseeing four outside consultants, including Jacobson, who are doing the actual work.

NESCSO’s board of directors includes health and human services officials from five of the six New England states, according to its website. Only Maine is not listed as a member.

Nicolella said Rhode Island’s designated board member is Patrick Tigue, the Medicaid director. (Nicolella herself is a former Rhode Island Medicaid director.)

The consortium’s two sources of revenue are state dues and proceeds from a national conference. The BHDDH review is a member benefit, Nicolella said. The contract encompasses not only the work on developmental disabilities but a review of rates for behavioral healthcare services and a model for outpatient services for patients of Eleanor Slater Hospital. But the state still must pay for the consultants’ work - $1.3 million over an 18-month period.

Ongoing RI DD Rate Review To Be Aired Thursday At Project Sustainability Commission Meeting

By Gina Macris

Elena Nicolella, executive director of a non-profit consortium overseeing a review of the rates Rhode Island pays private providers for services to adults wlth developmental disabilities, will address the Project Sustainability Commission Thursday, April 25.

Sen. Louis DiPalma, D-Middletown, the commission chairman, said Nicolella will explain the scope of the work, the timetable, and the documentation that is required under the terms of the consortium’s contract with the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Nicolella is executive director of the New England States Consortium Systems Organization (NESCSO), a non-profit collaboration involving five of the six New England states that aims to promote policies and programs that will serve the needs of the region in a cost-effective manner, according to its website. Only Maine does not belong to the regional group.

DiPalma said he expects that “everything will be on the table” about Project Sustainability, the fee-for-service payment system which providers say hamstrings their ability to offer integrated services in the community as required by a 2014 federal consent decree.

Project Sustainability, enacted by the General Assembly in 2011, forced providers to cut workers’ pay to minimum wage levels, wiping out established career ladders that helped bring continuity to the care of adults with developmental disabilities.

In November, Mark Podrazik, the consultant who advised the state in planning Project Sustainability, told DiPalma’s commission that reimbursement rates should be reviewed every five years.

Thursday’s Project Sustainability Commission meeting featuring Nicolella will begin at 2 p.m. in the Senate Lounge at the State House, according to DiPalma.

NESCSO has a $1.3 million contract with BHDDH over an 18-month period to review private provider rates for developmental disabilities and behavioral healthcare service. The contract also calls on NESCSO to provide technical assistance in connection with creating out-patient services for patients of Eleanor Slater Hospital.

The work in developmental disabilities represents about $700,000 of that total, according to a BHDDH spokeswoman.

RI DD Funding System Harms Quality Of Life, Advocates Tell House Finance Subcommittee

By Gina Macris

Anxiety, frustration, and fear permeate the lives of adults facing the daily challenges of developmental disabilities, and by extension, the lives of families and caregivers who support them, say numerous Rhode Islanders who wrote to members of the House Finance Committee recently to explain the human effects of chronically underfunded services.

“The person receiving support grieves and is forced to live in a state of perpetual frustration” because of missed opportunities resulting from staff shortages, wrote Diane Scott, who has worked 29 years at West Bay Residential Services. Likewise, “the impact on employee morale is a palpable anxiety and frustration,” Scott said.

Howard Cohen * Photo by Anne Peters

Jacob Cohen has had to begin taking a “significant regimen of medication to control his anxiety so he could deal with his daily life,” wrote his parents, Howard and Patricia Cohen of North Kingstown. They said it has been “heartbreaking” to watch him lose control of his daily activities as funding has shrunk over the last decade.

The letters from Scott, the Cohens, and others served as written testimony in a March 28 budget hearing on the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) before the House Finance Subcommittee on Human Services, chaired by Rep. Alex Marszalkowski, D-Cumberland.

And some of concerns expressed before the finance subcommittee about the quality of care overlapped with remarks made a few hours earlier the same day before a special legislative commission studying the state’s fee-for-service reimbursement system for private developmental disability services, Project Sustainability.

Another letter writer, Holly Walker said she knows a client of AccessPointRI who spends every Monday morning telling everyone how upset she is that she missed Sunday church services – again – because there was no one available to take her.G

A Warwick mother, Pam Goes, wrote that frequent change of staff has increased her own fears about the safety of her non-verbal son.

“Staff who don’t know him struggle to know what he needs, at home and in the community. He is unable to tell them when he is sick, when something hurts, when he is afraid. And my fears are increased as well,” Goes wrote.

Two other mothers, Lisa Rego and Claudia Swiader, asked members of the Finance Committee “to put themselves in the shoes of the parents and families of individuals with a developmental disability.”

“Wouldn’t you want to know that your loved one was being cared for by someone who wanted to be there? Wouldn’t you want to know that your loved one was receiving the support they needed to keep them safe, healthy and happy?” wrote Rego and Swiader, president and vice president, respectively, of the Autism Society of Rhode Island.

Scott, the veteran caregiver at West Bay Residential Services, reminded legislators that “any Rhode Island citizen may be one injury or disease away from needing support for a disability.”

The children and families of workers also suffer the consequences of inadequate funding, others said.

Brandi Ekwegh of Cumberland, a former manager of an AccessPoint group home and a single parent, described missing her tween-aged daughter’s concerts and award ceremonies and even leaving her home alone at 2 a.m. because there was no one else to de-escalate a client’s behavioral outburst at work.

When her daughter said she spent more time with her clients than with her, Ekwegh said, “I was crushed but she was absolutely correct.”

Disabled Have Civil Right To Services

By any measure, caring for adults with developmental disabilities is costly, but the integration mandate of the Americans With Disabilities Act also entitles them to services that allow them to access their communities for competitive employment and leisure activities of their own choosing.

The currently enacted budget for the state Division of Developmental Disabilities (DDD) totals $271.7 million in federal and state Medicaid money and miscellaneous other funds. Governor Gina Raimondo would add another $9.2 million to that bottom line, for an overall $280.9 million, to erase an existing deficit and pay for services during the fiscal year beginning July 1.

About $1.6 million in savings taken from the state-operated group home system, Rhode Island Community Living and Supports, would boost funding for privately-run services by $11 million over the next 15 months, according to information presented by the House Fiscal Office.

Within the $11 million total increase, Raimondo would set aside $6.4 million in Medicaid funds, including $3 million in state revenue, to raise the wages of front-line developmental disability staff by an estimated 34 to 41 cents an hour, depending on who’s drafting the projection.

Providers, Families, Seek $28.5 Million For Wages

Many of the letter-writers urged the Finance Committee to hike the state’s commitment for wages to $28.5 million, so that employers can meet unfunded overhead expenses in addition to passing along a wage increase to all their employees. Every Medicaid dollar the state spends generates a little more than a dollar in the federal Medicaid match.

As it now stands, the governor’s proposed increase would apply only to front-line workers, who typically make roughly $1 to $2 above minimum wage, if that.

In a letter to Marszalkowski , the subcommittee chairman, Kevin McHale, an administrator at AccessPoint, wrote that the average direct care worker at his agency makes $10.77 an hour, only slightly above minimum wage.

McHale, once a direct care worker himself, recalled that in 1987, the General Assembly voted to make a “substantial investment” in the private provider system by raising the pay of direct care workers to $7 an hour, about 90 percent above minimum wage, which was then $3.65 an hour.

At a time when the state was preparing to close the Ladd School, its only institution for persons with developmental disabilities, “this investment was seen as an intentional statement on the importance and value of the vital and challenging (yet rewarding) work that direct support professionals perform,” McHale wrote.

Today, private service providers operate at a loss for each person they employ, they say.

Regina C. Hayes, executive director of Spurwink RI, provided the committee with tables showing that the state funds a fulltime direct care position at $34,454, including an allowance of 35 percent of wages for employee-related expenses. But that figure is almost $9,900 per-person less than what it costs Spurwink for mandatory taxes, vacation, sick and holiday pay and health insurance, Hayes said.

The percentage the state pays for employee-related overhead is set through “Project Sustainability,” the controversial fee-for-service system enacted by the General Assembly in 2011.

Howard and Patricia Cohen, Jacob’s parents, say that Project Sustainability has harmed their son. The change in reimbursement methods “masqueraded as an improvement but in effect was merely a way to reduce costs,” they wrote.

Those already receiving services are not the only ones affected by the budget constraints.

Agencies Can’t Afford New Clients

Linda Ward, executive director of Opportunities Unlimited, a service provider, said that current funding and staffing situation makes it difficult for her agency to take on new clients or launch new initiatives.

Opportunities Unlimited recently had to “step back” from plans to develop a home designed to meet the significant psychiatric and behavioral needs of four women, Ward said.

Her testimony echoed comments made earlier in the day by Gloria Quinn, executive director of West Bay Residential Services, who addressed the special legislative commission studying Project Sustainability.

Families of young people aging out of the special education system often struggle to find agencies that are able to provide services for their sons or daughters, she said.

“We can’t find the staff”, said Quinn, a commission member. An agency’s ability to respond to the demands of the community is at its heart “a wage issue,” she said.

Andrew McQuaide, a senior director at the Perspectives Corporation, called the situation “self-directed by default,” meaning that parents who may not otherwise chose to do so are left to manage their loved ones’ individual programs because they can’t find an agency to provide appropriate services.

McQuaide, another member of the Project Sustainability commission, said that so-called self-directed families are having the same problems as the agencies in hiring direct care workers, but the families are doing it “without support.”

At the commission meeting, Barbara Burns said she recently decided to do a self-directed program of day services for her sister, not because she wants to do it but because it was the only way she could get respite care. Burns’ sister has Down syndrome and Alzheimer’s disease and lives with her on Aquidneck Island.

A proposal in the governor’s budget would create an “independent provider” model of care through the Executive Office of Human Services with a single fiscal intermediary to give those needing services at home broader choice in selecting caregivers.

The independent provider model also would give BHDDH the option selecting one fiscal agent to manage the accounts of self-directed families of adults with developmental disabilities, Linda Haley, a House fiscal advisor, told the finance subcommittee.

The prospect of unwanted change has worried some families, but a BHDDH spokesman said April 1 that DDD will continue with five fiscal intermediaries in accordance with its regulations, as well as a desire to give consumers choice.

Burns, meanwhile, said there should be a single state bureaucracy to address the needs of people with developmental disabilities, whether they are children in school, healthy adults, or people facing chronic illness or the end of life. Families face enough challenges caring for a special child, she said.

Semonelli * image courtesy of capitol tv

Christopher Semonelli, vice president of Rhode Island Families Organized for Change and Empowerment (RIFORCE) , made the same point to the finance committee’s human services subcommittee a few hours later.

Parents of special education students describe the transition to adult services as “falling off a cliff,” said A. Anthony Antosh, Director of the Sherlock Center on Disabilities at Rhode Island College.

Rebecca Boss, the BHDDH director, told commission members that there are other ways to increase wages for direct care workers besides adding to the bottom line.

Even if the state increased wages, Boss said, the milennials millennials making up the current entry-level workforce are “a little different.” Direct care workers need adequate training and supports. “It’s about making sure people love their jobs,” Boss said.

L to R: Louis DiPalma, Rebecca Boss, Heather Mincey OF DDD. * Photo By Anne Peters

Wages are “part of it,” she said, but “I’m hesitant to say it’s the solution. It’s part of the solution.”

She recalled testimony presented to the commission in January about Vermont’s system, which included higher rates for direct care workers but much less reliance than Rhode Island on costly group homes.

Later, Boss told the House Finance subcommittee that she wants to reduce the number of adults with developmental disabilities living in group homes from the current 32 percent to the national average, 26 percent.

BHDDH also has launched a review of the reimbursement rates the state pays to private providers under the terms of Project Sustainability, with an eye toward creating an alternate payment model to the current fee-for service system.

Tom Kane, CEO of AccessPoint, reminded the finance committee members that the same healthcare consultant who helped develop Project Sustainability has just recommended that California increase developmental disability budget by 40 percent, or $1.8 billion. Rhode Island should be prepared for a a report that recommends a similar percentage increase, ane said, given that the state underfunded Project Sustainability from its inception.

Louis DiPalma, D-Middletown, the chairman of the Project Sustainability commission, made the same point earlier in the day.

The consultant hired for the rate review and study of alternate payment model, Elena Nicolella, executive director of the New England States Consortium Systems Organization, will speak at the next meeting of the Project Sustainability commission, according to DiPalma, the commission chairman. Nicolella is also a former Medicaid director in Rhode Island. The date of that meeting has not yet been set.