NESCSO Will Not Offer “Magic Number” on RI DD Rate Review, Leaving Decisions To BHDDH

Rick Jacobsen *** All Photos By Anne Peters

Rick Jacobsen *** All Photos By Anne Peters

By Gina Macris

A consultant to a regional consortium reviewing Rhode Island’s developmental disability service system outlined the scope of the group’s work and time line to a July 30 meeting of a special legislative commission.

The consultant also disclosed some preliminary findings about “Project Sustainability,” the fee-for-service reimbursement system also being studied by the General Assembly’s commission. No one appeared surprised by the early findings.

For example, the developmental disabilities caseload has had a compounded annual growth rate of 3 percent in the last five years, from 3,744 to a current total of 4,297.

And the data shows that the private agencies that provide most of the direct services – and bear the brunt of the work necessary to comply with a federal civil rights agreement - operate on precarious financial margins.

The presentation to the Project Sustainability Commission was made by consultant Rick Jacobsen and his boss, Elena Nicolella, executive director of the New England States Consortium Systems Organization (NESCSO), a non-profit group that provides analysis in the fields of health and human services to five states. The meeting was held at the Arnold Conference Center at the Eleanor Slater Hospital.

Nicolella and Jacobsen encountered pushback when they explained the role defined for NESCSO by the state Department Behavioral Healthcare, Developmental Disabilities and Hospitals.(BHDDH).

NESCSO will present options to BHDDH for system improvements toward the project goal of maximizing “opportunities for people to fully participate in their community,” according to a Powerpoint presentation that accompanied the talk. But it won’t deliver an independent recommendation or “magic number” on costs, Jacobsen and Nicolella said.

Tom Kane, CEO of AccessPoint RI, a private provider, said long experience in system-wide reform has taught him that the approach chosen by BHDDH is doomed to fail unless the effort also states the true cost of evolving to an integrated community-based model.

L. to R.: Andrew McQuaide, Kim Einloth, Tom Kane

L. to R.: Andrew McQuaide, Kim Einloth, Tom Kane

There has been no “tolerance” for even “having a (public) discussion about the cost of investing in the change process,” said Kane. “If you shift funds in an underfunded system, it’s not going to work. It’s just going to make the hole deeper,” he said.

In the 1980s and 1990s, when advocates pushed to close the Ladd School, the state’s only institution for people with developmental disabilities, “there was a community behind us, and we put an investment in the system in order to make that change happen, and it was dramatic change,” Kane said.

But there was no investment in changing the system in Project Sustainability, enacted in 2011, Kane said.

While the healthcare consultants Burns & Associates recommended an investment that was millions of dollars more than was being spent, Kane said, that number was never made public or discussed in the General Assembly. “What we ended up with was millions of dollars cut,” he said.

A few years later, when the demand grew for more community-based services, those reimbursement rates increased, but rates for center-based care decreased, despite the fact that providers continued to have the same fixed costs, Kane said.

The history of Project Sustainability has prompted a certain amount of “agida” among service providers regarding NESCSO’s work, said Andrew McQuaide, a Commission member.

“Having gone through a similar process and getting an end product that turned the system around and took us backward,”he said, providers are nervous that “we could go through a very similar process and come up with a poor product.”

He said his remarks did not reflect in any way on the current administration. Rebecca Boss, the BHDDH director, and Kerri Zanchi, the director of the Division of Developmental Disabilities, are both commission members and attended the meeting.

McQuaide and A. Anthony Antosh, another commission member, both urged Boss to make public all the data and reports produced by NESCSO, whose contract runs through June, 2020.

Antosh said there ought to be a direct relationship between the goals of the rate review and the recommendations of the commission. Commission members have submitted individual recommendations, which all advocate for the self-determination of adults with developmental disabilities. Their work will be synthesized into a final report, according to the commission chairman, Sen. Louis DiPalma, D-Middletown.

The manner in which NESCSO’s work will be shared with the public is under discussion, Boss said. She and Zanchi said they didn’t think it would be the best use of everyone’s time if the public discussion got bogged down in the minutia of the analytics at each stage in the process.

“We don’t want to be pulled off course but be mindful of the project as a whole,” Zanchi said.

Jacobsen and Nicolella said that NESCSO intends to produce data to enable BHDDH to make both near-term changes and longer-term reforms.

Preliminarily analysis of the audited financial statements of 16 private provider organizations confirms that the system is operating on a very close financial margin, said Jacobsen.

Elena Nicolella

Elena Nicolella

That’s not unusual, he said. Human services agencies across the country are in similar positions. At the same time, the tight finances mean the agencies may tend to be averse to risks like investing in system change or taking on new clients, Jacobsen said.

Jacobsen presented a preliminary analysis of audited financial statements from 16 provider agencies over the last two years, with tables organized according to the number of fiscal reports. The agencies were not identified.

For example, out of a total of 27 audited financial statements, 15 showed deficits and 11 showed surpluses. Of the 11 surpluses, 6 were less than 3 percent of revenues.

In another table summarizing 24 financial statements, 12 of them showed less than a month’s cash on hand at the end of the fiscal year.

And a third table on liquidity said that of a total 24 financial statements, only 4 had working capital to carry their agencies longer than 2 months. At the other extreme, 7 statements said their agencies had no working capital or were lacking up to two months’ worth at the end of the fiscal year.

Jaccobsen said the state has made advance payments to some struggling agencies, but these advances have been carried as liabilities on the books.

Commission members said that for some organizations with multiple sources of income, the agency-wide audited statements do not give an accurate picture of the fiscal margins in developmental disabilities.

Regina Hayes, CEO of Spurwink RI, and Peter Quattromani, CEO of United Cerebral Palsy, suggested that the financial picture is worse than it looked in Jacobsen’s tables and asked him to go back and look only at the income and expenses related to developmental disabilities.

Jacobsen said NESCSO will spend the entire month of August listening to providers. Engagement with consumers and their families is scheduled for September.

An analysis of earnings figures from the Bureau of Labor Statistics for May, 2018 indicated that the wages for direct care workers in Rhode Island are close to the median in comparison to other states. That doesn’t mean that agencies can hire and retain employees, Jacobsen said.

Here too, Jacobsen was asked to look more closely at the figures.

Louis DiPalma and Rebecca Boss

Louis DiPalma and Rebecca Boss

The commission chairman, DiPalma, said the figures Jacobsen used didn’t account for a raise the Connecticut legislature gave to all its developmental disability direct care workers to a minimum of $14.75. In Massachusetts, 30,000 people working as personal care attendants, including many working with adults with developmental disabilities, make $15 an hour, DiPalma said. And the figures Rhode Island reports to the Bureau of Labor Statistics put developmental disability workers in the same category as home health aides, who make more, DiPalma said. According to a trade association representing two thirds of private providers in Rhode Island, entry-level direct care workers make an average of $11.44 an hour. (They are soon to get raises.)

When Jacobsen mentioned that NESCSO plans to compare Rhode Island’s developmental disability services to those in other states, Kane, the AccessPoint CEO, said the consultants must make sure to include the amounts the other states spend on institutional care.

A comparison of community-based services among states does not yield a true picture of total state spending on developmental disabilities, since most other states also have institutions, Kane said. But Rhode Islanders who in other states would be institutionalized live in the community in Rhode Island instead, said Kane.

Jacobsen also presented other preliminary statistics:

  • There has been a 15 percent compounded increase in the number of people who direct their own programs in the last five years. NECSCO will look further at whether the increase has occurred by choice or whether it results from individuals and families being unable to find suitable services from agencies. “I suspect it’s a mix of both,” Jacobsen said.

  • Of a total of nearly $216.2 million in reimbursement claims paid by the state in the 2018 fiscal year, 51.4 percent was for residential expenses and 48.6 percent was for daytime services, case management, respite care, and independent living or family supports.

· In the category of daytime services, 4.2 percent, or nearly $4.5 million, was spent for employment-related and pre-vocational activities. Increasing employment is one of the main goals of the consent decree.

Collaboration Needed to Find Jobs, Solve Transportation Problems, For People With DD

By Gina Macris

For people with developmental disabilities, reliable public transportation – or the lack of it – can mean the difference between accepting a job offer and staying home.

A Coventry, RI man who had a chance to work at a Home Depot near his home faced that dilemma when he learned that the state’s paratransit system for people with disabilities could not go into the shopping center where the store is located.

To solve the transportation problem, the man’s family and his job developer, Rory Carmody, Director of Program Services at AccessPoint RI, pitch in to drive him to and from work, said Carmody’s boss, Tom Kane. But the hours the man can work are limited to the times Carmody and the man’s family are available for drop-off and pick-up, said Kane.

Kane, the CEO of AccessPoint, shared the story in a conversation after a June 18 meeting of a special legislative commission studying Project Sustainability, the state’s fee-for-service reimbursement system for private services for adults with developmental disabilities.

L to R: Scott Jensen and Scott Avedesian

L to R: Scott Jensen and Scott Avedesian

The session focused on the intersection of jobs and transportation, featuring remarks from three speakers:

· Scott Avedesian, CEO of the Rhode Island Public Transit Authority (RIPTA)

· Scott Jensen, Director of the Department of Labor and Training (DLT)

· Robert Kalaskowski, Chief of Policy and Planning for the Governor’s Workforce Board.

The example of the Coventry man illustrates the challenges of relying on the paratransit program, which operates only along corridors that mimic RIPTA’s regular bus routes. The shared RIde program for people with disabilities may drop off and pick up at sites no more than three-quarters of a mile outside a regular bus route, according to the RIPTA website.

Because RIPTA doesn’t send regular buses to Little Compton or Foster, the RIde option for residents with disabilities is not available either, said Sen. Louis DiPalma, D-Middletown. And, he added, there’s only one public transit stop in Tiverton.

Recently, the directors of the agencies responsible for services for the elderly and those with intellectual and developmental disabilities accompanied Avedesian on a paratransit run that picked up four individuals, one of them in a wheelchair, and took them to their various destinations.

Rebecca Boss, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said it was a “really good experience for everyone to see the hands-on, labor-intensive type of transit that we perform.”

For the officials, the experience took two and a half hours, from the time the van left the RIPTA garage to get the first client until the time it returned, Avedesian and Boss agreed. It happened to be a day with a lot of traffic, Avedesian added.

Even though the clients weren’t on the van all that time, Kate Sherlock, a commission member, said the run took too long. “I cry when I have to be in the car for two hours,” she said.

Avedesian said that for him, the biggest takeaway from the experience was the need for matching the locations of clients and available jobs to minimize travel time, “so that we’re not taking someone all the way from Woonsocket to Newport.”

Avedesian said he’s impressed by the “intensive amount of time, money and labor involved in moving one person from one end of the state to the other.”

DiPalma said the average cost of a paratransit run is $34, but the program is reimbursed roughly $8 to $14 of that cost, depending on the intensity of the client’s disability. He said the reimbursements are Medicaid-authorized federal and state transportation dollars assigned to BHDDH clients to cover travel. No public transit system in the country is financially self-sufficient, DiPalma noted.

DiPalma has convened an informal group of representatives of public and private agencies who are interested in solving the transportation problems of people with disabilities. The agencies include BHDDH , DLT, RIPTA, the Community Provider Network of Rhode Island, the Providence Chamber of Commerce, the office of U.S. Rep. James Langevin, and others, he said.

Moving forward, transportation must become more malleable to the needs of the people, he said. If someone lives in Glocester and has a job in Newport, that person may be able to get work closer to home, but “if that’s the job they have, that’s the job they have,” DiPalma said.

Jensen

Jensen

Jensen of DLT offered a different way of looking at the transportation problem.

If people with developmental disabilities can be viewed as a source of excellent workers, rather than a population needing support, a stronger argument can be made for investing more in transportation, because of the value this group brings to the economy, he said.

“The company will be receiving value, the person will be paying income tax and can buy more things than they otherwise would,” Jensen said.

He said “coalitions of the willing” are “trying to find those positions where companies recognize the value of people with developmental disabilities. That takes time.”

He said a “handful” of companies, like Home Depot and CVS, have made the “moral choice” to employ individuals with developmental disabilities.

“We want to also help make this a practical choice” for many businesses, Jensen said, by starting with employers’ demands and finding the right match in the labor force - “the right person, in the right place, at the right time, and with the right skill set.”

BHDDH officials recently put the employment rate for adults with developmental disabilities at 29 percent.

Kalaskowski

Kalaskowski

Kalaskowski, of the Governor’s Workforce Board, said the state is promoting that strategy in the Real Pathways program, part of the broader Real Jobs initiative.

In Real Pathways, DLT works with private providers of employment-related services for adults with developmental disabilities, promoting collaboration among job developers to find the best match between the employer’s demand and worker skills.

A job developer working alone may not have just the right client and face the choice of either forcing a match that won’t work out in the long run or letting a relationship with an employer die, Kalaskowski said. In a network of job developers, one may pass along a lead to another and they will return the favor down the line, he said.

Andrew McQuaide, a senior director with Perspectives Corporation, said Jensen and his team deserve “a lot of credit” for fostering a culture of collaboration.

McQuaide recalled how one man with developmental disabilities connected with a training opportunity offered by the Rhode Island Nursery and Landscape Association because both he and AccessPoint’s Rory Carmody “spread the word.”

Then, when a job with a landscaping company opened up, someone in the community who knew the man from the RINLA training recommended him for the position. The man got the job “not because DLT put any dollars forward,” McQuaide said, but because of the “culture and the connections” that DLT promoted.

Boss, the BHDDH director, said she is excited about the collaboration with DLT. Tracey Cunningham, the director of employment services, and other dedicated officials at BHDDH do a good job in helping adults with developmental disabilities find work, but the staff at DLT “lives, eats and breathes” jobs, she said.

The next meeting of the Project Sustainability commission, set for June 25, has been cancelled because of likely schedule conflicts as the General Assembly wraps up its 2019 session, DiPalma said. He said the meeting will be re-scheduled sometime in July.

RI DD Rate Reviewers Asked To Fix Payment System That Still Promotes Segregated Care

By Gina Macris

This article was updated June 17 with a response from the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

The Rhode Island state agency which funds services for adults with developmental disabilities has acknowledged for the first time that its underlying reimbursement system for private providers is structurally deficient for complying with the Americans With Disabilities Act as required by a 2014 federal civil rights decree.

While the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has pursued services promoting greater independence for adults with developmental disabilities, “the underlying reimbursement system has lagged,” according to a statement of the scope of work outlined for a consortium tasked with reviewing reimbursement rates.

The rate structure “is grounded in past practices and cost bases associated with the provision of services in the sheltered workshop setting,” BHDDH officials wrote.

“In order to adequately meet consumers’ needs, providers have been paid supplemental funds to address the deficiency in the payment rates,” BHDDH explained in the contract.

BHDDH has a contract with the New England States Consortium Systems Organization (NESCSO) to update a rate structure that has not been reviewed for eight years and to suggest alternates to the current payment methods.

In describing the work ahead for NESCSO, BHDDH says it is:

“seeking to further promote the development of a service system and associated reimbursement arrangements that maximize the opportunity for persons with DD to participate to the fullest possible in community-based activities.”

In 2014 the U.S. Department of Justice found that the reimbursement system incentivized segregated care in sheltered workshops and day centers in violation of the Integration Mandate of the ADA, reinforced by the U.S. Supreme Court in the Olmstead decision.

The Obama administration began vigorously enforcing the Olmstead decision in 2009, but the consent decree in Rhode Island was the first settlement that addressed segregation in daytime services rather than housing.

The consent decree provides a decade-long period of federal oversight of the state’s efforts to change the system. Enforcement of the consent decree entered its sixth year April 9. It will take at least another year for changes in rates and payment methods to go into effect, with the approval of the General Assembly. Enforcement of the decree is set to expire in 2024, but the state would have to show substantial compliance before federal oversight ends.

While some improvements in services have been made, the contract with NESCSO indicates that BHDDH officials believe the reimbursement system has held back compliance efforts.

Staffing Ratios Hinder Needed Flexibility

The underlying problem, said the BHDDH director in an interview, is a rule that requires a ratio of 60 percent funding for community-based activities and 40 percent funding for center-based daytime care in each client’s individual authorization.

The contract language alludes to this situation in describing staffing ratios. It says two areas of “particular focus” are daytime rates paid for employment-related and non-work services. In sheltered settings, for example, there might be one worker for every ten clients. But in the community the number of clients for each worker would have to be much smaller.

Rebecca Boss, the BHDDH director, said the department seeks a “predictable rate structure not driven by very precise ratios” but rather by the needs and preferences of individual clients.

The supplemental payments intended to mitigate the deficiencies in the underlying system “are an increasing portion of overall payments, reflecting the inadequacy of the current rates,” the contract language explained.

According to department officials, that language was meant to refer to the historical trend, in which supplemental payments had increased to as much as $7.8 million in a three-month period.

Boss froze new approvals at the end of 2017, except for emergency health and safety considerations and a couple other narrowly defined exceptions, to try to curb a multi-million dollar deficit at a time when Governor Gina Raimondo seemed inclined to cut developmental disability services significantly.

According to records BHDDH turns in to the General Assembly every month, the supplemental payments from January through March of this year have declined to $3.6 million, about half the total for the same period in 2018.

Historically, supplemental payments have been awarded only when consumers, families, or providers have made successful appeals of individual authorizations. The appeals, which often have required considerable time and energy, must be made annually, or the authorization reverts to the original amount. The appeals process is but one facet of what many families and providers describe as an unstable system.

Kerri Zanchi, director of the Division of Developmental Disabilities, said supplemental payments are still a big part of reimbursements to private providers, and BHDDH wants NESCSO and its consultants to scrutinize them as part of the review process.

Study Commission To Hear from NESCSO

The rate review coincides with the work of a special legislative commission studying the current reimbursement system, called Project Sustainability.

On June 18, the commission will meet to hear presentations about employment and transportation issues from Scott Jensen, director of the Department of Labor and Training; and from Scott Avedesian, CEO of the Rhode Island Public Transit Authority.

On June 25, the executive director of NESCSO, Elena Nicolella, is scheduled to appear before the commission to give an update on the rate review now being conducted by four consultants under NESCSO’s supervision.

In the meantime, some commission members have given BHDDH their own statements on how they think consultants should approach the work and their ideas for a new system of services that allow consumers and their families to shape the way state funds are used.

A spokeswoman for providers has urged NESCSO and its consultants to gain a thorough understanding of what it costs for a private agency to provide services under the terms of recently-revised regulations for provider operations and quality certification standards.

These bureaucratic steps are part of the state’s efforts to comply with the consent decree and the federal Medicaid Home And Community Based Final Rule (HCBS). Like the consent decree, HCBS embraces the integration mandate of the ADA, but it is a nationwide rule applying to all community-based services funded by Medicaid.

Paradox In Unspent Funds For Employment

Tina Spears, executive director of the Community Provider Network of Rhode Island, warned that simply looking at the way providers utilize the current reimbursement model, which is based on segregated care, will not give the complete picture of the needs of the system.

She did not mention specifics, but a case in point is the performance-based supported employment program, which was funded by a $6.8 million allocation made by the General Assembly in the fiscal year that began July 1, 2016. That allocation still has not been completely spent.

Excluding a start-up period from January through June of 2017, the program spent $2.5 million the first year, from July 1, 2017 through June 30, 2018. It’s expected to spend $4 million in the fiscal year ending June 30, according to a BHDDH spokesman.

Providers initially complained that they could not meet their costs with the series of one-time incentives offered by the program, which was built on same reimbursement system designed for center-based care.

Incentives and enhancements were made more generous during the second year, and negotiations are underway for a third year of the program.

In the meantime, Rhode Island’s last sheltered workshop closed last year and BHDDH says community-based, competitive employment has increased to about 29 percent of adults with developmental disabilities.

A study released by two nationwide associations of providers in January said Rhode Island’s rate of competitive employment was about 19 percent, but that figure dated from 2015. The “Case for Inclusion” ranked Rhode Island 32nd in the nation on its integration efforts. It was compiled by ANCOR - the American Network of Community Options and Resources, and UCP – United Cerebral Palsy.

Consumers Want More Control Over Money Assigned To Them

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, and Kelly Donovan, who receives state-funded supports, each called for a system that allows greater consumer control of state funding and greater flexibility in the way it is used.

The state should “ensure that funding is available across all imaginable living arrangements,” particularly in situations where a consumer owns or rents a property and a caregiver or family would like to move in. The caregiver or consumer should be allowed a stipend, as is permitted in many other states, to make this type of arrangement viable, Nerney said.

The state should also ensure that adults with developmental disabilities have the support of familiar staff while they are hospitalized to avoid the trauma of being in an unfamiliar environment where they can neither make themselves understood nor understand what is being said to them, Nerney said.

In addition, the state should adopt a way to assess the support a person receives from family or friends in deciding funding levels. While most of those receiving services from the Division of Developmental Disabilities live in the family home, that home may include a large healthy family, a single aging parent, or a grandparent with Alzheimer’s and a sibling who also has significant needs for support, Nerney said.

And he called for more funding for those hired by self-directed consumers and their families to write support plans necessary to qualify for state funding. The expectations for the plan writers have multiplied over the last 20 years but the fees remains the same at $500 for the initial plan and $350 for an annual renewal, Nerney said. There should be an allowance for self-directed families who need ongoing coordination of services, he said.

Kelly Donovan, who herself receives services from BHDDH gave a concrete example of what greater control and flexibility might look like.

She said people should be able to enjoy an outing without:

A: going home early because a staffer’s shift ends

B: taking everyone in your group home with you, even if one or more of them really didn’t want to come.

“People should be able to have their designated time to themselves and opportunities to be involved in community activities,” she said.

The public may submit comments or questions about the rate review process by email at BHDDH.AskDD@bhddh.ri.gov. Please copy and paste the email address into your email program, or get a link by visiting http://www.bhddh.ri.gov/developmentaldisabilities/community_forums_event.php

In response to this article, Randal Edgar, a spokesman for BHDDH, released the following statement on June 17:

The article published on June 12 on the Olmstead Updates blog presents a misleading picture of Rhode Island’s system of care for adults with developmental disabilities.

The headline claims this system “promotes segregated care.”

This assertion is false.

The article attempts to back up this assertion up by referring to language in a state contract with a consultant that is reviewing the rates paid to DD providers. But in referencing the contract language, the article misreads the intent of that language.

The contract language speaks from a historical perspective. It states that while the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals has pursued the development of “a services system that supports greater independence” for the DD population, “the underlying reimbursement system has lagged.” It goes on to say that the “basis for the development of prevailing rates is grounded in past practices and cost bases associated with the provision of services in the sheltered workshop setting.”

Acknowledging that the existing rates are grounded in past practices and need to be updated is not the same as saying the system as it operates today promotes segregated care, and in saying it does, the article ignores and/or minimizes many steps the department has taken to improve the care provided to adults with developmental disabilities. It should be noted that the reporter met with BHDDH officials for more than an hour but did not press this assertion and obtain their view of the contract language.

The article is wrong again when it states that department froze new approvals for supplemental payments in 2017 to help offset a budget deficit. The department reduced those approvals, applying more stringent standards, not because of a possible budget deficit but because this made sense from a policy standpoint.

Finally, the article gives voice to people outside the department, asking them to describe where the DD care system should go, without giving BHDDH officials a chance to share their vision. In the process, it conveys a false impression that BHDDH officials are not passionate about moving this system forward.

We are disappointed that the article did not present a more complete and accurate picture.

Separately, the public may submit comments or questions about the rate review process by email at BHDDH.AskDD@bhddh.ri.gov. Please copy and paste the email address into your email program, or get a link by visiting http://www.bhddh.ri.gov/developmentaldisabilities/community_forums_event.php

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

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

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.

Boss at 4-25 meeting edited.jpg

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.

R.I. Tightens Controls In Wake Of Embezzlement Of More Than $220K In DD Client Funds

By Gina Macris

See correction at end of article

A now-deceased Rhode Island state employee embezzled a total of $220,602 from a checking account held in escrow for residents of the state-run group home system, the state’s Office of Internal Audit has reported. 

The employee, Kevin B. Ward, died Nov. 26 at age 60, a few weeks after the State Controller flagged a suspicious transaction from the client checking account Ward controlled on behalf of residents of RICLAS, or Rhode Island Community Living and Supports, a part of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).. 

Rhode Island State Police investigated a suspicious death of a BHDDH employee last November that was ruled a suicide, according to a statement a state police spokeswoman made to the Providence Journal Dec. 13. 

On April 8, the spokeswoman, Laura Meade Kirk, said State Police could make no additional comment apart from the fact that its investigation closed without criminal charges. 

State officials have described the situation involving Ward’s death as tragic

“While no RICLAS program recipients were directly affected, this is a tragic situation for many of our state employees who knew and worked with the late Kevin Ward,” said BHDDH director Rebecca Boss after the state Office of Internal Audit completed its report April 3. Ward had been a financial manager for RICLAS from February, 2005 until his death. 

The state has made good on the funds belonging to the RICLAS residents and has recouped more than $70,000 from its insurance company, according to a spokeswoman for the Office of Management and Budget (OMB). The state also is exploring legal avenues to recover the rest of the money. 

The suspicious activity was discovered Nov. 2 by the state’s Controller, who, along with the Treasurer’s Office, was in the midst of a broader effort to tighten internal controls over the custody of state-owned checking accounts, the director of the Office of Internal Audit, Dorothy Pascale, wrote in an April 3 memo to Boss.

The OMB spokeswoman, Brenna McCabe, elaborated: 

Since November, the state’s Office of “Accounts and Control has worked with our finance units across all agencies to implement and reinforce measures to help prevent this from happening again.” 

Among other oversight and control measures, she said, new rules require two persons to sign checks and prevent those who signed the checks from cashing them. 

Ward had been authorized both to sign and cash checks on behalf of the State of Rhode Island.

According to Pascale’s memo, Ward transferred money from the RICLAS’ residents’ account to another, long-dormant, state-owned RICLAS checking account at Bank of America, and from there, to his own Citizens Bank checking account. 

Ward had complete control over the Bank of America account that paid directly into his own Citizens Bank account. He even received the account statements from Bank of America.  

Pascale said investigators found records of 21 checks totaling $220,602 payable to Kevin B. Ward that were deposited in Ward’s Citizens Bank checking account from August, 2011 to November, 2018. The check that triggered the investigation had been made out to Ward for $4,500 on June 20, 2017 but was not spotted for more than 16 months. 

On August 1, 2011, the state-owned Bank of America account had a balance of $38,476, but the bank does not retain records longer than seven years, so investigators were not able to gather evidence of account activity prior to that date, Pascale said.

Ward skimmed funds from a client account containing social security-related income used to help pay for the state’s cost of operating RICLAS facilities, in effect serving as contributions toward room, board, utilities and the like.

An earlier version of this article incorrectly described the purpose of the client account.

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

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

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

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.

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.

'Our Lives Turned Upside Down' When Daughter Entered RI Adult DD System, Mother Says

Sustainability+commission+Dec.+meeting+main+pic+cropped+.jpg

Louis DiPalma, Rebecca Boss, and Kerri Zanchi watch A. Anthony Antosh of Rhode Island College present consumer and family perspectives on the state’s services for adults with developmental disabilities Photo by Anne Peters

By Gina Macris

A Rhode Island Senate study commission spent nearly two hours Dec. 12 laying out a catalog of strengths and weaknesses in Rhode Island’s system for helping people with developmental disabilities.

But in the end, the personal stories of two mothers, Amy Kelly of Smithfield and Martha Costa of Portsmouth, focused the commission’s attention on the crises now unfolding for at least several families who are at their wits end.

In the catalogue, their experiences come under “residential services-need for specialized medical/behavioral residential models.”

For Amy Kelly, that means that every single service provider in Rhode Island – about three dozen - has turned away her 21 year-old daughter, who is autistic, has behavioral problems, and functions in many ways as a kindergartener.

“So now what do I do?” Kelly asked in a letter to the commission chairman, Sen. Louis DiPalma, D-Middletown. Kelly is a widow, and works fulltime. Her daughter, Kayla, was asked to leave the Trudeau Center in Warwick because of injuries to staff.

For a month now, Kayla has been at home all the time and her problematic behaviors have intensified, Kelly wrote. “She is out of her routine, asking for “friends,” “yellow bus,” “trip,” and other favorite things and experiences that she misses..

Kelly has been forced to choose “self-directed” services, meaning that she must find her own workers,“which is pretty much impossible,” she wrote to DiPalma.

And the Home Based Therapeutic Services that helped Kayla outside of school hours while she was still in special education are no longer available.

“I cannot believe there are no programs in RI for families in this situation!” Kelly wrote. “When my daughter turned 21 in May everything in our lives turned upside down.”

Martha Costa * courtesy of Capitol TV

Martha Costa * courtesy of Capitol TV

Martha Costa agreed. She attended the Commission hearing at the State House on behalf of her own family and five others in Portsmouth who have become friends as their children have faced behavioral challenges growing up and have aged out of the school system into purview of the state Division of Developmental Disabilities (DDD).

As the mother of a 22 year-old man on the autism spectrum, she said her experience has been that once young people with complex needs turn 21, “there is really no place for them to go.”

The family might be told to go to a hospital, but with the exception of Butler Hospital in Providence, a mental health facility, “the hospital is horrible, because it’s just more trauma going there.”

The 21 year-old daughter of a friend of Costa’s had meltowns after her mother – her primary caregiver and the one who organized her services - died in September. The woman’s daughter, who has multiple disabilities, was hospitalized because there was “nowhere for her to go,” Costa said. The young woman was “restrained, medically and physically. It’s heartbreaking,” Costa said.

“It’s lucky you have good parents who are helping these kids, but you know, we’re all getting older and we’re not going to be able to,” she said. The aging of parents, who are often primary care givers, is a broad concern among families, according to survey results.

“There are some kids who don’t have that parent support and they’re on the street,” Costa said. “That’s sad, when they can be a very productive part of our community.”

Kerri Zanchi, the state’s Director of Developmental Disabilities, thanked Costa for coming forward.

One of the biggest challenges in residential services, Zanchi said, is a dearth of specialized homes for individuals with behavioral and other complex needs, as well as a lack of therapists and other clinicians to give them the proper attention.

“There’s a huge need coming” as teenagers with complex disabilities leave schools, she said. “We need to know what that need is and we need to start working on it lot earlier than when they turn 21 and come into our system.”

Zanchi referred to the division’s Eligibility by 17 policy, which aims to give families, schools, and the adult system plenty of time to plan a smooth transition.

In the catalogue, one of the “challenges” the state officials listed in implementing the Eligibility by 17 policy is “resource and service difference for transitioning youth vs adult services.” In the summary that family and consumer representatives submitted, they commented that “transition from high school is a ‘nightmare.“

Zanchi continued her response to Costa. “We certainly recognize every day the crises we have to manage” in order to support the individuals involved and to try to grow the system’s capacity, she said.

And there are committed providers who are willing to help the state, but who also want to do that with the right staffing that will keep all individuals safe, Zanchi said. “We are all hands on deck. I know it probably doesn’t feel like enough,” she said.

Costa agreed. “ I understand what you’ve been doing and I know that everyone has been working hard . Still, it’s not enough,” she said.

Gloria Quinn, executive director of West Bay Residential Services, said her agency works very well with the state as a partner in exceptional situations, but it is extremely difficult as long as there there is a paucity of established expertise in the community that is accessible to the developmental disabilities providers.

“Very often we are creating something new, which takes an enormous amount of time,” Quinn said, and the funding is not enough. Most importantly, when the agency helps someone with increased needs it runs the risk of jeopardizing supports for other people, particularly in a residential setting, she said.

Peter Quattromani, President and CEO of United Cerebral Palsy Rhode Island, pointed to the low wages for direct care staff that frustrate all involved; those who love the work but can’t pay the bills, employers who can’t fill jobs, and consumers and families who can’t find suitable services.

“It’s an incredibly difficult job” , he said, and attracting staff is likewise very difficult, given the low wages.

Commission member Kelly Donovan, who herself receives services from DDD, had sparked the conversation by wondering aloud why those with serious behavioral problems have difficulty finding appropriate support.

She said she agreed with Quattromani and Costa, and she added another factor that she believes contributes to the problem: a societal stigma against those with a broad range of mental illnesses who exhibit aggressive behavior.

During the last month, commission members, representing the executive branch of government, private providers, and consumers and their families, were asked to complete a survey cataloging the strengths and weaknesses of the existing Medicaid fee-for-service system, called Project Sustainability.

The commission plans to use the results of the survey, named the “Current State Assessment,” to seek advice from outside experts and further the group’s deliberations in the future, according to a statement issued at DiPalma’s behest.

Directly or indirectly, a lack of adequate funding in various contexts permeated three summaries of the survey results, each one presented by a representative of each of the three segments of the commission. Transportation, for example, has become a bigger problem now that there is a greater emphasis on community-based services, which require more than the two daily trips usually allowed by individual funding authorizations. Families also cited difficulties of non-English speakers in getting information and services.

But Rebecca Boss, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, also said the developmental disabilities budget has increased significantly since 2015, and listed advances made in the last two years, including:

  • $6.8 million for supported employment

  • two annual wage increases for direct care workers (The average hourly pay for front-line workers is $11.36 an hour)

  • the acquisition of a modern data management system

  • an increase in staff for quality management, implementation of a federal civil rights consent decree and for Medicaid-mandated Home and Community Based Services, as well as assistance in maximizing the existing budget.

She described the funding needs of the system as “dynamic.”

“We are engaging in discussions with our partners about what those needs are,” Boss said. “Governor (Gina) Raimondo has demonstrated a willingness to look at the system and make adjustments in the budget as we go along. So this is the process that we’re currently working on and engaging in those conversations on a regular basis.”

Raimondo is to present adjustments for the current budget, as well as her proposal for the next fiscal cycle, during the third week of January.

Christopher Semonelli, a commission member and the father of a teenager with complex needs, commented on the origins of Project Sustainability, which seemed to him like system “in a death spiral, and there was basically a feeding frenzy as to how to continue the system; how to go after the available funds.”

“I don’t think the legislative base should be blamed” for cutbacks that launched Project Sustainability in 2011, “because there was a lack of advocacy, “he said. “Strong advocacy could have prevented that from happening. That is huge and needs to be built going forward.”

DiPalma had the last word. Semonelli “made a great point about advocacy, but he shouldn’t let the General Assembly off the hook,” DiPalma said. “This is where the buck stops.”

Read the summaries presented at the meeting. For the state’s assessment, click here. For consumer and advocates’ comments, click here. For service providers’ comments, click here.

RI DD Services: The Annual Scramble Begins To Avoid Waitlists or Reduced Payments To Providers

By Gina Macris

For the second consecutive year, the director of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has raised the possibility that adults with developmental disabilities might face waiting periods for services if the department cannot resolve a projected $9,.4 million deficit by next June.

Most of that estimated $9.4 million shortfall - $7.6 million – occurs in the Division of Developmental Disabilities (DDD).

Waiting lists and reductions in reimbursement rates to private providers are among alternatives proposed by BHDDH director Rebecca Boss in a corrective action plan for dealing with the shortage in state revenue. Private organizations do most of the front-line work with adults facing intellectual and developmental challenges.

Any state agency running over budget must submit a corrective action plan to the state budget office. Seven other agencies are in the same position as BHDDH.

While complying with the requirement for a deficit-reduction plan, BHDDH also has prepared a budget request which seeks a additional $12.7 million in state revenue for the private system of developmental disability services through June 30, 2020. That total includes:

  • $7.6 million in supplemental funding to close the gap in payments to private service providers during the current fiscal year.

  • $5.1 million for the fiscal year that begins July 1, 2019.


No Wage Hikes In BHDDH Budget Request

The combined $12.7 million request does not reflect any wage increases for direct care workers in private agencies, a BHDDH spokeswoman said. According to a trade association, workers receive an average of $11.36 an hour - less than the $12 hourly pay offered at the Target store on the other side of the Massachusetts state line in Seekonk during Thanksgiving week.

The consultant involved in developing the existing fee-for-service rate structure seven years ago said recently that it’s “past time” for an overhaul of the reimbursements. Both House and Senate leaders say they support the idea of wage hikes for front-line workers.

Governor Gina Raimondo has not responded to email requests from Developmental Disability News for comment on recent public remarks of the consultant, Mark Podrazik, President of Burns & Associates.

Raimondo is due to present her budget proposal to the General Assembly the third week in January. She must consider many factors, including a projected $41.9 million deficit in overall state spending and recent revenue estimates running about $5.4 million below the previous projections, made last May.

Federal Officials Watching Budget Process

A lot can happen between now, the start of the budget planning cycle, and the end of June, when General Assembly adopts final figures to close out one fiscal year and launch a new budget on July 1.

And when it comes to spending on developmental disabilities, the conversation has broadened in the last several years to include the ever-increasing demands for reform imposed by a 2014 federal civil rights consent decree between the state and the U.S. Department of Justice.

Before the budget was finalized in the last session of the General Assembly, the independent federal court monitor for the consent decree had sought and obtained written assurances from Raimondo that the state would support mandated systemic changes in services as Rhode Island moves toward community-based, integrated supports of adults with developmental disabilities.

In a letter dated May 14, 2018 to Charles Moseley, the federal court monitor, Raimondo said, “Rhode Island has made significant progress in meeting the requirements of the Consent Decree, and we will continue to prioritize this work.”

What the state’s commitment to developmental disabilities looks like in the current budget is level funding.

Last January, Raimondo proposed a cut of $18.4 million to payments for private service providers, but after better-than-expected revenue estimates in May, pressure from constituents, and Moseley’s request for assurances, Raimondo reversed her position and the General Assembly approved a status quo budget.

Boss Details The Current Problem

Now Boss says that level funding will not be enough to meet expenses, primarily because of an increasing caseload and rising average costs per person. These two trends can be traced back to compliance with the consent decree.

In the last fiscal year, which ended June 30, DDD spent a total of $228.3 million in federal-state Medicaid funds, including $111.1 million in state revenue, for payments to private agencies that provide most of the developmental disability services, Boss wrote to the state Budget Office in October.

The current budget authorizes an expenditure of $229.4 million for those Medicaid payments, with $107.5 from state revenue and the rest from the federal government.

However, in the current budget, DDD is expected to stretch the $229.4 million to cover some additional mandates:

  • a total of $1.5 million on contracts and staff to support the consent decree

  • $620,000 – about $400,000 more than anticipated – to pay for an increase in wages for home health aides and licensed practical nurses (LPNs) who serve adults with developmental disabilities in their own homes. Boss said the state Medicaid office had set a slightly higher rate for the LPNs than the department had anticipated.

Together, these two factors mean that there is $1 million less in the current budget than there was in the last one for actual services to adults with developmental disabilities, Boss wrote in a report to state Budget Office on spending for the first quarter of the fiscal year.

At the same time, DDD estimates its overall caseload will increase about 1.5 percent during the current budget cycle, based on trends over the last two years. That increase will cost an additional $1.1 million from state revenue,, according to Boss.

In addition, nearly 900 persons are slated for re-evaluation of their needs during the current fiscal year, with interviewers using a revised assessment that has been resulting in generally higher per-person costs since it was adopted in November, 2016, Boss said. The use of the revised assessment, the Supports Intensity Scale – A, is expected to add about $900,000 from state revenue to service costs, Boss wrote in the first-quarter spending report, submitted in October.

Moreover, DDD expects to spend all $6.8 million allocated by the General Assembly for a supported employment program that pays private providers performance bonuses for job placement and retention., The first allocation, in the fiscal year that began July 1, 2016, was underutilized.

Boss said she did not favor a wait list for services as a corrective action plan because it would cause hardship and make DDD unable to continue complying with the 2014 federal consent decree.

Rate reductions to private service providers also would make it impossible to comply with the consent decree and would destabilize the entire system of care, Boss said.

Savings anticipated in State-Run Group Homes

Boss said she does favor another option, consolidation of the state-run group home system known at Rhode Island Community Living and Supports (RICLAS.) DDD is working on closing one state-run group home and relocating existing staff to save on overtime costs, Boss said.

Changes in group home configuration toward smaller units more accessible to the community are being required anyway by the Medicaid Home and Community Based Final Rule.

The consultant for Burns & Associates, Mark Podrazik, recommended in 2011 that the state gradually eliminate RICLAS to more more equitably fund private providers, who were facing severe cuts in payments that resulted in dramatically lower wages and made it difficult for employers to fill job vacancies, problems that persists today.

In testimony Nov. 13 before a special Senate commission, Podrazik said he was told in 2011 that the state did not want to address RICLAS out of concern about a fight from unions.

Over the last several years, however, the size of the RICLAS caseload has declined through attrition. For example, at the start of 2016, there were 210 persons in RICLAS homes, state officials said at the time. Six weeks ago, in mid-October, the RICLAS caseload had shrunk to 126, according to state records.

RI Project Sustainability's Plan For Enhanced DD Services Was "Cover" For Budget Cuts - Testimony

By Gina Macris

Louis DiPalma, Chairman of Project Sustainability Commission Photo By Anne PETERS

Louis DiPalma, Chairman of Project Sustainability Commission Photo By Anne PETERS

Project Sustainability, introduced in Rhode Island in 2011 as a method for enhancing individualized services for adults with developmental disabilities, instead has diminished the quality of their lives.

That assessment set the stage Oct. 9 for deliberations of a Senate-sponsored commission charged with studying Rhode Island’s past and present system of developmental disability services, with the aim of designing a better future.

At the same time, the chairman of the 19-member panel, Sen. Louis DiPalma, D-Middletown, emphasized that the purpose of the commission is not to assign blame but to learn from the past and present to figure out how to best move forward. The commission must report to the Senate by March 1.

Project Sustainability was “a well-manicured statement to cover up” cuts in funding and services, said Tom Kane, CEO of AccessPoint RI, one of three dozen private agencies serving adults with developmental disabilities in Rhode Island.

Kim Einloth Testifies

Kim Einloth Testifies

Project Sustainability had a “major impact on the quality of service we were able to deliver,” said Kim Einloth, a senior director at Perspectives Corporation, one of Rhode Island’s largest service providers. She said the community-based program of day services was forced to put people in large groups, lay off specialists like occupational and speech therapists and discontinue consulting services with physical therapists.

Gloria Quinn, executive director of West Bay Residential Services, said she noticed immediately that the disabilities system was “demoralized, decreased and degraded” when she returned to Rhode Island after a nine-year absence in 2013. When Quinn moved out of state in 2004, she said, Rhode Island was one of the top-ranked states nationwide for its programs for adults with developmental disabilities. Quinn sits on the commission.

In a meeting that lasted about 90 minutes, the commission covered a broad range of topics related to Project Sustainability and the controversies linked to it: inadequate overall funding, depressed worker wages, and an assessment used – or misused - to determine individual allocations for services.

The planning and execution of Project Sustainability has been well documented, primarily by Burns & Associates, healthcare consultants hired by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) in 2010.

DiPalma said that from what he’s seen, Burns & Associates was “charged with providing a plan, and the state chose to do something different.”

Rebecca Boss, the current director of BHDDH, reviewed the history of Project Sustainability, designed to bring uniformity to funding for specific services and enable families to make informed choices about services. Project Sustainability aimed to use data gathered through new funding methods to create incentives for services to be delivered in the most integrated setting possible, she said.

“Change is hard, and even with perfect planning, it would not result in everyone’s needs being met,” Boss said.

“I think everyone knows” that the current administration – including Governor Gina Raimondo, Kerri Zanchi, the Director of Developmental Disabilities, herself, “is committed to working with our stakeholders” to figure out “where do we go from here,” said Boss.

“Many may have different views of history, as is often the case,” said Boss, a commission member.

Kane, of AccessPoint, said he didn’t want his anger about Project Sustainability to reflect the way he regards the current administration. The working relationship service providers now have with the BHDDH administration, he said, is “better than we’ve had in a very, very long time.”

Tom Kane Chats After The Commission Meeting

Tom Kane Chats After The Commission Meeting

The plans for Project Sustainability “talked about individualizing services and moving toward person-centeredness and all of the lovely buzz words,” said Kane, but the rhetoric really described “a system we already had that got dismantled.”

While Project Sustainability talked about individualization, inclusion and community support, the regulations governing developmental disability services “were always about center-based group activity.”

“Finally, under this administration, the regulations have been put forward that will put back the flexibility we need,” Kane said. The new regulations have passed a public comment period and are to be finalized by the end of the year.

Funding, however, has a long way to go to support the kinds of changes providers, families, and consumers want, by all accounts.

Commission member Andrew McQuaide zeroed in on historical funding of developmental disability services.

McQuaide said that developmental disability spending had been on a downward trend in Rhode Island since 1993.That was the year before the last residents left the Ladd School, the state’s only institution for those with intellectual challenges.

Citing According to Burns & Associates, McQuaide said:

  • Between 1993 and 2008, Rhode Island’s expenditures for developmental disabilities decreased by 29.5 percent at the same time the national rate increased by 17.8 percent.

  • Rhode Island is only one of 14 states to report a reduction between 2007 and 2009 in per-person expenditure, a decrease of 4 percent at the same time the national trend registered a 5.6 percent increase.

McQuaide also said that anecdotal information indicates about half the state’s private providers were reporting operating deficits in 2009, ill-preparing them to absorb the additional funding cuts that came along with Project Sustainability.

An overview prepared by the Senate Fiscal Office showed that actual spending on developmental disabilities, including both state and federal Medicaid funds, dropped $26.2 million in the fiscal year that began July 1, 2011 when compared to spending during the previous 12 months.

The overview shows that, adjusted for inflation, the current budget still has not caught up to the spending reach of the developmental disability system in the year before Project Sustainability was enacted.

Chart courtesy of RI SENATE FISCAL OFFICE

Chart courtesy of RI SENATE FISCAL OFFICE

Prior to Project Sustainability, private agencies negotiated an annual sum for each individual in their care.

The new system generated standard reimbursement rates for each of 18 different services that agencies were authorized to provide.

Kane noted that from the outset, the funding for Project Sustainability was not designed to cover all of the actual costs of private providers, almost all of whom had submitted extensive financial data to the state.

A BHDDH memo for rate-setting that the department sent to the General Assembly noted that the reimbursement rates eventually adopted for Project Sustainability were 17 to 19 percent below “benchmark rates” which Burns & Associates calculated from the median wage for direct care jobs - $13.97 an hour.

The state could not afford more, the memo said, citing the poor economy at the time.

The memo said the lower reimbursement rates were calculated by reducing the allowances for fringe benefits for workers and in some cases, cutting transportation and program expenses.

Kane, who is familiar with the rates in the memo and other Burns & Associates documents, said providers were “actually told in a meeting, ’We’ll see what this (the benchmark wage) costs but we won’t actually bring this to the legislature because they’ll laugh at us.’

“I don’t understand why the expenditure of well over a million dollars on Burns & Associates wasn’t taken seriously enough” to put forward actual expenditures “and let the legislature decide whether it was appropriate,” Kane said.

McQuaide, meanwhile, quoted from the memo. “We did not reduce our assumptions for the level of staffing hours required to serve individuals. In other words, we are forcing the providers to stretch their dollars without compromising the level of services to individuals,” the memo said. See related article

McQuaide said the experience of the last seven years has shown that it was a “fiction” to think the system of private providers would be forced to implement Project Sustainability without compromising services.

The state has a separate system of group homes for adults with developmental disabilities which has not been subject to rules or the pay cuts that came with Project Sustainability. Instead, the workers are unionized state employees with full benefits.

Donna Martin and Andrew McQuaide

Donna Martin and Andrew McQuaide

In the privately-run system, McQuaide said, the wages paid direct care workers still don’t reach the original $13.97 per hour “benchmark”, or median-pay rate, calculated by Burns & Associates.

The most recent data available indicates that the average entry wage for direct care workers is $11.37 an hour. It comes from a survey of member agencies of the Community Provider Network of Rhode Island (CPNRI) conducted last February, according to Donna Martin, executive director of the trade association, which represents about two thirds of service providers in Rhode Island. Martin said she is in the process of updating the figure.

Martin, a commission member, told the panel that CPNRI has met with the BHDDH leadership and representatives of Governor Raimondo’s office and the Office of Management and Budget to review current provider reimbursements in comparison to an extensive menu of rates envisioned by Burns & Associates in planning Project Sustainability. BHDDH, OMB, and the Governor have already planning a budget proposal for the next fiscal year.

DiPalma said Burns & Associates originally wanted to advance a “competitive” average wage of $15.46 an hour.

Addressing wage inequities will be a critical focus of the commission’s work, he said. Two years ago, DiPalma started a campaign to raise direct care wages to $15 an hour over five budget cycles. Massachusetts already pays its direct care workers a $15 hourly rate, and many Rhode Islanders find they don’t have to move to take advantage of these higher-paying positions at agencies that are an easy commute from their homes, DiPalma said.

Another source of rancor over the last several years has been the assessment used to determine individual funding levels under the terms of Project Sustainability – the Supports Intensity Scale (SIS), which was updated in November, 2016.

Kane has said data compiled by Burns & Associates indicate the original version of the SIS was used to cut individual funding. See related article

A. Anthony Antosh

A. Anthony Antosh

Even though the SIS has been revised, the state’s top academic researcher in developmental disabilities, A. Anthony Antosh, told the commission that using the SIS as a funding tool violates the original intent of the instrument as an aid for professionals designing individual programs of support for persons with disabilities.

Antosh, a commission member, is the retiring Director of the Sherlock Center on Disabilities at Rhode Island College.

His comments apparently prompted Kane to recall another moment in a Project Sustainability planning meeting in which Burns & Associates’ human services partner praised the multi-faceted assessment providers were using at the time to figure out how much funding a particular person needed. In each case, the assessment took into account intellectual capacity, responses in various situations and potential risks.

That Burns & Associates partner, the Human Services Research Institute of Oregon, wrote a memo to the General Assembly saying that “ ‘resource allocation’ should never be thought of as mostly an exercise involving the assessment and simple service delivery.”

Policy makers should also take into account the goals of the programs, such as increasing community integration or increasing employment, before determining the array of services and rate schedules, HSRI said.

“Data collected by a measure such as the SIS is necessary,” the memo said, “but certainly not sufficient.”

The memo was condensed before it reached the General Assembly, and the recommendation against using the SIS alone to determine individual funding was eliminated,

RI Gov Pledges To Support "Current Level" Of DD Services In FY 19; No Fiscal Details Yet

By Gina Macris

Rhode Island Governor Gina Raimondo says her administration is committed to maintaining “the current level of services” for adults with developmental disabilities in order to meet the demands of a 2014 consent decree between the state and federal government.

But in a letter to a federal court monitor in the consent decree case, the governor did not spell out how much money the administration believes the state should spend.

The consent decree is a 2014 agreement between the state and the U.S. Department of Justice (DOJ) which requires Rhode Island to correct violations of the Americans With Disabilities Act by enabling adults with intellectual or developmental challenges to seek competitive employment and enjoy community-based, integrated non-work activities.

In the letter to the monitor, Raimondo wrote: “I will continue to work collaboratively with the General Assembly on all funding recommendations, including those supporting efforts under the Consent Decree.”  

Following better-than-expected revenue projections issued May 10, both House and Senate leaders said that at a minimum, they support restoration of an $18.4 million reduction in reimbursements to private service providers that Raimondo has proposed for the budget cycle beginning July 1.

The consent decree monitor, Charles Moseley, had sought three specific assurances from Raimondo, in the form of a letter or statement to U.S. District Court Judge John J. McConnell Jr.

Moseley asked that the letter or statement say that the budget would:

  •  “be re-set to reflect current FY 2018 expenditure and service levels”
  •  “continue to be revised throughout FY 2019 as needed to fully fund the provision of services”           consistent with requirements of the consent decree
  •  provide “sufficient personnel resources” to the Division of Developmental Disabilities to   “carry out  quality improvement activities consistent with Consent Decree requirements.”

Raimondo’s letter to Moseley, dated May 14, contains no details about any budget changes she may be planning. Nor does it mention quality improvement activities. 

On May 18, a spokeswoman for Raimondo said that “increasing funding for developmental disability support services is one shared priority for which she (the governor) continues to advocate as we further engage in discussions with the General Assembly about the final budget."

Asked whether the governor supports the employment of adults with disabilities as one of the state's workforce solutions, the governor's spokeswoman pointed out the new Real Pathways RI program. It is a workforce investment initiative that focuses on job-seekers who face various barriers to employment. Among the public, private, and non-profit organizations that participate in the program are four providers of developmental disability services, who are working with Home Depot and CVS to match their clients to jobs. 

Moseley had requested a statement from the governor on her position as he prepared to make recommendations to McConnell about what court action, if any, might be needed to ensure that compliance with the consent decree moves forward.

At the most recent court hearing April 10, the judge directed Moseley to find out if there was consensus among state officials and DOJ lawyers about a course of action the court might take to ensure enough funding. Failing such an agreement, McConnell said, he would hold an evidentiary hearing to lay the groundwork for a court order.

Moseley has concluded that Raimondo’s proposed budget, as it now stands, is insufficient to continue to support the modest salary increases to direct support workers put forward by Raimondo and approved by the General Assembly in the last two years. In addition, it would not allow the state to “continue services at current levels,” he said.

The monitor described his efforts to get a sense of the state’s position a  letter to Eric Beane, the Secretary of Health and Human Services, dated May 9. That was a day before the state’s revenue estimating conference concluded that revenues were projected to exceed previous estimates by $135 million through the end of Fiscal 2019.

A week earlier, on May 2, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) did not dispute the monitor’s conclusions about the inadequacy of the proposed budget for the next fiscal year, Moseley wrote to Beane.

But the director, Rebecca Boss, “affirmed governor’s commitment to fully fund Consent Decree activities during FY (Fiscal Year) 19 and said that no rate cuts in reimbursements or spending reductions were being proposed,” according to Moseley.

“She noted that the Governor had demonstrated a history of including supplemental funding to the DD (developmental disabilities) services budget when expenditures exceeded enacted amounts and would continue to do so if necessary,”  Moseley wrote.

On separate occasions, both Boss and Beane said assurances about the state’s support of the consent decree could be sought from the governor, Moseley recalled.

For some time, Moseley has said that the Division of Developmental Disabilities needs four fulltime inspectors to conduct onsite reviews of all three dozen private service providers every two years and to ensure their services meet the standards of the consent decree.

He said Kerri Zanchi, director of developmental disabilities, and Kevin Savage, the BHDDH licensing administrator, “argued strongly” during a meeting with Moseley May 2 that two inspectors, or “surveyors” as they will be called, “would be sufficient to meet the need and ensure compliance” along with an data analyst and “other measures.”  Zanchi was to provide a subsequent written analysis of the rationale for the BHDDH approach.

In an earlier report to the monitor, BHDDH officials explained their plan for a centralized, departmental quality assurance unit. In the first year, the two surveyors would be supervised by Anne LeClerc, Associate Director of Program Performance in the Division of Developmental Disabilities, which is also to have the benefit of its own data analyst and a divisional operations manager.

In this initial year, the new “surveyors” will enable the division to rigorously analyze the effectiveness of its existing day services to better plan for future improvements, according to the state’s report to the monitor April 30.

In the second year, however, the surveyors will be assigned to a centralized quality management unit to connect the BHDDH investigatory unit with licensing and certification of private service providers, according to the state’s quarterly report. 

Raimondo's spokeswoman said she supports the BHDDH quality improvement plan. 

To date, there have been no filings in the court record indicating what Moseley will recommend to the judge.

To read Governor Raimondo's letter to the consent decree monitor, click here.

To read the consent decree monitor's letter to the Secretary of Health and Human Services click here.

RI Speaker: General Assembly Likely To Reverse $18 M Cut In DD Services Proposed By Governor

By Gina Macris 

It is likely the General Assembly will restore about $18 million in proposed cuts to private providers of developmental disability services in the budget cycle that begins July 1,” Rhode Island House Speaker Nicholas A. Mattiello said May 10.

In a video interview published by GoLocal Prov, Mattiello said:

“We have about $18 million in proposed cuts to the developmentally disabled community. I don’t want to speak for everybody, but I’m certainly going to strongly advocate for giving the money back and restoring it. I don’t think that’s an appropriate place to go for your cuts. And we were always planning on restoring those funds. I think that thinking is pretty universal.”

Mattiello was interviewed at the conclusion of the May Revenue Estimating Conference, which indicated revenues are running about $130 million to $135 million ahead of estimates for the current fiscal year and the next one, according to slightly differing preliminary news reports.  An official statement was not immediately available.

A spokesman for Mattiello added that the “budget will be finalized in the coming weeks, and there are no firm numbers yet, but the Speaker is committed to addressing the developmental disabilities issue in the budget.”

The chairman of the Senate Finance Committee, Sen. William J. Conley,Jr., D-East Providence and Pawtucket, has taken a firm stand against the $18 million reduction in reimbursements to private providers proposed by Governor Gina Raimondo in January.

During a Senate Finance Committee hearing May 3, Conley framed the budgetary issue in terms of the civil rights of adults with developmental disabilities to have the assistance they need to enjoy services in their communities as spelled out in the Olmstead decision of the U.S. Supreme Court.

And that day for the first time, Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals(BHDDH), acknowledged that governor’s recommended budget for the fiscal year beginning July 1 would not allow the state to continue its compliance efforts with a 2014 federal consent decree based on the Olmstead decision.

For the fiscal year beginning July 1, Raimondo has proposed $250.8 million for developmental disabilities. That figure is $6.1 million less than the bottom line enacted by the General Assembly for the current fiscal year and a total of $21.4 million less than current spending levels.  Raimondo’s budget proposal would raise the current spending limit from $256.9 million to $272.2 million for the fiscal year ending June 30 to cover a cost overrun, treating it as a one-time event.  

In the BHDDH budget request to the governor last fall, Boss asked for a total of $278.8 million for developmental disabilities beginning July 1.

U.S. District Court Judge John J. McConnell, Jr., who presides over implementation of the consent decree, has made it clear over the last six months that he has a keen interest in the funding issue.

At the most court recent hearing April 10, an independent court monitor said he would draft recommendations for a proposed court order to ensure compliance with the consent decree

The monitor, Charles Moseley, was to first consult with the state and the U.S. Department of Justice to see if they could all reach consensus on the recommendations. Moseley’s report to the judge has not yet appeared in the court file.

But McConnell has received a letter from a parent asking him to “stop the governor’s plan to cut $18 million from I/DD (intellectual and developmental disabilities) services.”

Chris Torgovec has a son with autism who is living in a group home and has started to work a few hours a week “so he is doing well there, but I’m afraid of what could happen if these services would go away.

“It would not be a good thing for anyone. I’m sure there are other places to make cuts but not to people that actually need help, “ Torgovec said.

RI Senate Finance, BHDDH To Seek More Funding To Protect Services And Rights Of Adults with DD

By Gina Macris

Governor Gina Raimondo’s proposed $18.4 million cut to developmental disability services for the next fiscal year would not allow Rhode Island to continue its compliance efforts in connection with a 2014 federal consent decree, Rebecca Boss acknowledged for the first time during a budget hearing before the Senate Finance Committee on May 3.  

Boss - RI CApitol tv

Boss - RI CApitol tv

Boss is the highest ranking official in the Raimondo administration responsible for adults with developmental disabilities in her position as the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Her admission came in response to the finance committee chairman, Sen. William J. Conley, Jr., who laid out a detailed and persistent line of questioning that revealed an authoritative grasp of the issues of the the consent decree and established him as a leading advocate for expanding the developmental disabilities budget.  

Boss said in initial remarks that based on an “updated data analysis of monthly caseloads and more positive revenue trends, we will be advocating for increased funding for BHDDH so Rhode Islanders’ needs are met.”

Conley - RI CAPITOL TV 

Conley - RI CAPITOL TV 

But Conley asked her to revisit a specific question about funding that had first been posed to her by U.S. District Court Judge John J. McConnell, Jr. during a hearing April 10. McConnell asked whether the proposed $18.4 million cut in reimbursements to private providers effective July 1 would affect the state’s ability to move forward with compliance efforts related to the consent decree.

At the time, Boss said BHDDH did not have enough data to give an answer.

Conley said the consent decree “does nothing more, quite frankly, than require the same standards that the U.S. Supreme Court established in 1999.”

The so-called Olmstead decision clarified the integration mandate of the Americans With Disabilities Act, spelling out the rights of all individuals with disabilities to choose services that are part of their communities.    

Nearly 20 years after the Olmstead decision, Rhode Island is “still struggling to meet a constitutional standard of care,” Conley said.

“Four years after the consent decree was entered and after repeated court monitor reports, we still cannot answer the question as to whether or not we are providing sufficient resources, really, to provide justice and dignity to the people with intellectual and developmental disabilities in the state of Rhode Island.”

“While I understand you have to represent the voice of the administration, and everybody expects you to be a loyal soldier and team player, the budget that you are giving us doesn’t do that,” Conley said, addressing Boss.

Otherwise, Boss would have been able to clearly answer the judge that the loss of $18 million would not affect progress on the consent decree and would have been able to spell out how its goals would be achieved with the remaining funds, Conley said.

When Conley asked what the Senate Finance Committee could do to help BHDDH, Boss and the Director of Developmental Disabilities, Kerri Zanchi, both said members could advocate for more flexibility for the department to assign resources.

Boss said she agreed that the department needs more resources but wasn’t sure that the prescriptive nature of the consent decree was the best approach.

But Conley replied said that when the state isn’t meeting the standards, or doesn’t have the data to show its progress – a problem since 2014 – “the default position is prescriptive standards, because they need some kind of measuring stick.”

One measure is whether the “proposed budget would provide the level of services that are constitutionally mandated,” Conley said.

“What’s your answer today?” he asked, bringing the discussion full circle back to the judge’s question.  

Boss said, “With the revised analytics done, we could say today that the budget proposed would not continue the service delivery” in the current fiscal year.  The consent decree requires an increase in commitment during each year of implementation. equired by the consent decree.

While Boss did not offer a figure, Sen. Louis D. DiPalma, D-Middletown, the first vice-chairman of the committee, said developmental disabilities would need about $275 million to $280 million in federal and state funding during the next fiscal year, based on the original budget request the department made to the Governor’s office last fall.

DiPalma presented a chart showing that actual funding for developmental disabilities has lagged behind inflation since July 1, 2011, which marked the introduction of “Project Sustainability,” the current fee-for service reimbursement system that has come under increasing criticism for imposing restrictions on providers – and the state bureaucracy – in implementing the consent decree.

For example, the chart shows that the $239.8 million allocated for developmental disabilities effective July 1, 2010 would be the equivalent of $274.5 million allocated effective July 1, 2018, the start of the next fiscal year, with an adjustment for inflation according to the consumer price index.

Raimondo’s proposal, as it now stands, would allocate only $248.1 million effective July 1, counting only the federal-state Medicaid funding. (Other miscellaneous funds would add slightly more than $2 million to the bottom line.)

The Senate on May 1 gave final approval to a resolution creating a special commission to study the reimbursement system under Project Sustainability, including the use of a standardized assessment tool keyed to a funding formula that has never been disclosed. The commission has until March 1, 2019 to issue its report.

Sen. Walter S. Felag, Jr., D-Warren, Bristol and Tiverton, said he favors fully funding developmental disabilities.

He said it seems that in the last eight to ten years, there has been “tremendous pressure” to decrease these expenditures,” with particular challenges on residential costs from 2013 to 2017 as BHDDH has tried to move people out of group homes to less expensive shared living arrangements.  He questioned whether it has been all worthwhile.

Boss said there have been investments in developmental disabilities in that time, and Conley remarked that Boss and her staff are doing “tremendous work” with the resources they do have.

Beth Upham put a parent’s perspective on services. Her daughter, Stacy, a resident of a group home with an active calendar, “has a life we never could have given her,” she said.

She said she has met with Governor Raimondo, who has “promised she would support this community.”

But if the governor’s existing budget proposal is enacted, Upham said, “every person in the system will suffer. They will be sicker. There will be more hospitalizations. My daughter, my baby girl, will suffer,” Upham said.

“We have been fighting this system ever since she turned 21,” Upham said.

She asked, “why, for the last 15 years, has this community been targeted for cuts?”

RI Consent Decree Monitor Will Draw Up Proposed Judicial Order to Ensure Adequate State Funding

By Gina Macris

Judge John J. McConnell, Jr. of U.S. District Court signaled during a hearing April 10 that he is prepared to act to ensure that Rhode Island complies with a requirement of a 2014 consent decree that calls for “timely” funding of integrated services for adults with developmental disabilities.

But it is not yet clear what judicial action might look like in relation to the language of the consent decree, which does not quantify compliance in terms of dollars and cents.

Governor Gina Raimondo has proposed a developmental disabilities budget for the fiscal year beginning July 1 that would cut $18.4 million in federal and state Medicaid funds from current spending limits on privately-operated developmental disability services for adults and another $3 million from a state-operated network of group homes.  

That reduction comes on the heels of an already-underfunded system of services and would “permanently derail compliance with the consent decree,” said Jeffrey Kasle, lawyer for nine service providers, who spoke during the informal hearing, or “status conference” at the invitation of an independent court monitor.

The monitor, Charles Moseley, said he would  draw up a list of proposed funding-related actions for the judge to consider. Marc DeSisto, the state’s lawyer, and Victoria Thomas, who represented the U.S. Department of Justice, each said they wanted to review the proposal before the judge takes action.

If there is no consensus, McConnell said, he will hold a formal hearing and take evidence before issuing an order.

Since 2016, when he began reviewing the consent decree, McConnell has tried to make information about compliance accessible to the public, insisting that periodic conferences be held in open court and stressing the informality of the proceedings.

The review on April 10 was no exception, as the lawyers and state officials spoke from a podium facing the audience in the towering, mahogany-paneled courtroom, so spectators could better hear the proceedings. McConnell, wearing business clothes instead of his judicial robes, sat near the court stenographer just inside a circular bar that normally separates litigants from the public. 

The informal atmosphere, however, belied the gravity of the funding issue, which McConnell called the “elephant in the room,” and its implications for judicial action.

The monitor, Moseley, and lawyers for the DOJ and the providers all concurred in their concerns over funding. 

Officials of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said they needed better data to make a case for a bigger budget and noted that $116 million more will have been spent on developmental disabilities during the Raimondo administration,  between 2015 and 2019, than was spent from 2010 to 2014.

It was in 2014 that Rhode Island was found in violation of the integration mandate of the Americans With Disabilities Act (ADA) by relying on a segregated system of work and non-work activities that could survive on significantly less staffing that is mandated today through the consent decree.

Kasle, the providers’ lawyer, noted that the current administration at BHDDH, led by department director Rebecca Boss and the director of the Division of Developmental Disabilities, Kerri Zanchi, have shown a commitment to collaborating with providers that is the “best in a decade.”

But much of the state’s current compliance with the consent decree occurs because the private providers are doing the work, Kasle said.

“If all they can do is keep people safe,” he said, consent decree compliance will “fall apart.”

A decade ago, direct care workers made $3 to $5 more an hour than minimum wage, Kasle said. The legislative efforts to raise wages in the last two years, which added $11 million to the budget, are appreciated but they have just kept the workers on a par with the minimum wage, he said

For providers,  who can pay only $11 or $12 an hour, “it’s almost impossible to fill jobs,” Kasle said.

And if the state is to integrate individuals with developmental disabilities in the community, allowing them a choice in how their programming will be achieved, the state will need more direct care workers, he said.

Victoria Thomas, a lawyer for the DOJ, said that on the most recent site visit in February, she and her colleagues spoke to a provider who had had to lay off several middle managers because of budgetary constraints.

Employees have seen their salaries cut; paid vacation was eliminated, and workers have had to increase their contributions to health care, Thomas said.

The judge, meanwhile, asked Boss, the BHDDH director, whether the state can comply with the consent decree if Governor Raimondo’s budget for the next fiscal year is enacted without any changes.

Boss said she didn’t know the answer. Nor could she say whether BHDDH could comply with the consent decree if no cuts were made and current spending was maintained. 

Boss said BHDDH is “committed to implementing the consent decree. We want every individual to live in the community as they wish.”

Last fall, Boss submitted her department's budget request for the fiscal year beginning July 1 far higher than what Governor Raimondo later proposed to the legislature.  Boss asked for a total of $278.8 million in federal and state funds, or $28 million more than what Raimondo ultimately submitted to the General Assembly.

In a cover letter, Boss wrote at the time that “any further reductions could have further significant repercussions financially and operationally for the department further impacting some of the most vulnerable citizens within our state.”

For the fiscal year beginning July 1, Raimondo has proposed $250.8 million for developmental disabilities, which is $6.1 million less than the bottom line enacted by the General Assembly for the current fiscal year.

The proposal of $250.8 million is also $21.4 million less than current spending levels. Because of current cost overruns, Raimondo has proposed adding $15.3 million to the existing budget of $256.9 million, for a total of $272.2 million, to fill the budget gap through the end of the fiscal year June 30.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here are the numbers:   

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

RI DD Public Forum Raises Questions About Balancing Next Budget; No Firm Path Ahead

 l to r: Tracey Cunningham, Brian Gosselin, Rebecca Boss                                                                                                                                                        Photos By Anne Peters 

 l to r: Tracey Cunningham, Brian Gosselin, Rebecca Boss                                                                                                                                                        Photos By Anne Peters 

By Gina Macris

Rhode Island’s developmental disability agency “has no intention at this time to cut any services” to clients or reduce rates to private service providers, the departmental director told some 30 people gathered for a quarterly public forum at the Pilgrim Senior Center in Warwick Feb. 26.

Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), responded to a question from the audience about the budget proposal of Governor Gina Raimondo, who would slash a total of $21.4 million from developmental disability services, including $18.3 million in reimbursements to private providers.

Greg Mroczek, whose son and daughter both receive services from BHDDH, had asked about the budget in relation to the requirements of a 2014 federal consent decree.

 The Olmstead decree requires Rhode Island to transform its daytime services for adults with developmental disabilities from an over-reliance on sheltered workshops and segregated day programs to a system of integrated supports for employment and non-work activities that comply with the Americans With Disabilities Act.

Boss said that “presenting a balanced budget is a challenge” in any year. But it’s particularly challenging when the state faces a structural deficit of about $200 million in the fiscal year that begins July 1.   

Boss said that the governor, the Executive Office of Health and Human Services, and BHDDH are all committed to making sure that “the funding available to the dd (developmental disabilities) system is going to meet the needs of the individuals that we service.

“We believe we will have the services necessary for compliance with the consent decree,” she said. The consent decree covers daytime work and leisure activities but does not address residential services, the area where BHDDH has put an emphasis on cost-cutting in recent years.

Medicaid May Offer Path Forward  

Later in the meeting, Boss explained that the state is exploring the use of a Medicaid option that could help BHDDH balance its budget. The change, she said, also could achieve the programmatic goal of providing case management and coordination that is “free from funding conflicts and free from provider conflicts.” 

The Medicaid option involves the creation of a Health Home, the federal government’s name for an independent entity that would provide adults with developmental disabilities comprehensive care management, care coordination, health promotion, comprehensive transitional care, individual and family support, and referral to community and support services, Boss said.

For the first two years of operation, the Health Home would be supported with a 90 percent federal Medicaid match for every state dollar spent, Boss explained. For Rhode Island’s current fiscal year, Medicaid reimburses Rhode Island at a rate of 51.34 percent for every state dollar spent. For the fiscal year beginning July 1, the so-called Federal Medical Assistance Percentage (FMAP) will be 52.30.

The 90 percent federal match of the Health Home has the potential to bring in millions more in federal Medicaid dollars, but only for a limited period of time.

Boss described the Health Home approach as a “pretty good opportunity.” She asked Brian Gosselin, Chief Strategic Officer for the Executive Office of Human Services, to speak in greater detail about the Health Home option, but Gosselin demurred. 

Because creating a Health Home for developmental disabilities would involve seeking an amendment to the Rhode Island Medicaid State Plan, BHDDH must seek permission from the General Assembly before filing an application, Boss explained.  The request for that authorization to move forward with an application is in Article 14 of the governor’s proposed budget for the fiscal year beginning July 1.

It would be next January at the earliest that BHDDH could try out a Health Home for developmental disability services, and “that might be optimistic,” Boss said.

RI Experience With 'Health Homes' 

Rhode Island already has three Health Homes, Boss said; one for those with mental illness, another for those with opioid addiction, and a third for children and families, called CEDARR Services.

Having been involved in the planning for two of the three Health Homes,  she said, “I can tell you this is a heavy lift” that involves a complicated application process and fundamental system-wide changes in the state’s approach to coordinating developmental disability services. 

John Susa, who has a son with developmental disabilities and is a member of the Rhode Island Developmental Disabilities Council, relayed what he saw when he participated in the creation of CEDARR, one of the three Health Homes mentioned by Boss.

“I thought it was a great idea,” Susa said. “However, as time has gone on, I’m less certain that it was a good idea. I found a tremendous amount of money spent on case management,” he said; people “going to a lot of meetings, but the end result was a very limited amount of output in terms of the impact on the quality of life.”

Boss said she valued Susa’s perspective. “Whatever happened in CEDARR, we’ll try not to do that,” she said.

At the same time, Boss said “it’s not definite” the state will pursue the Health Home option.

She did not say what else might be done to balance the budget.

One Medicaid Rule At Odds With Need For Care

Renee Doran

Renee Doran

Meanwhile, Renee Doran, whose adult daughter has developmental disabilities, said her daughter’s support person stayed with her when she had to go to the emergency room recently but was later denied pay for that day for the very reason that the worker was helping the young woman in the hospital setting and not in the community. 

As it turned out, her daughter was admitted to the hospital and Doran spent four days at her side. But what would have happened if she had been out of state or otherwise unavailable? Doran asked.

Heather Mincey, administrator in the Division of Developmental Disabilities (DDD), said the situation arose because community-based workers are paid from one Medicaid waiver while hospital-based workers are paid from another.

Mincey said the hospitals have the wherewithal to pay a developmental disability worker who must take a client to the emergency room.

And Boss said BHDDH can work with hospitals to let them know what services are needed. She said BHDDH often works with the state Department of Health, which oversees hospitals, and can “leverage that relationship” to make sure there is cooperation between hospitals and developmental disability services.

The public forum covered a gamut of topics, most of them related to the state’s incremental progress in meeting detailed requirements of the consent decree.

Focus on Supported Employment

Among other things, BHDDH announced an information session on employment-related services March 9 that will be tailored to the needs of individuals and families who do not get services from a particular agency but design their own programs.

Of about 3700 individuals receiving developmental disability services from BHDDH, roughly 500 are self-directed. Only about 8 self-directed individuals were able to participate in the first year of a performance-based supported employment program in 2017, according to Tracey Cunningham, the chief employment specialist at DDD.

Cunningham said the performance-based program is trying to attract more clients from the self-directed group in the current program year.

The session on March 9 for self-directed families and individuals will be from 9 to 11 a.m. in Room 126 of Barry Hall, 14 Harrington Rd., Cranston.

Anyone who is interested in information but can’t attend the session may call Cunningham at 462-3857, or email her at Tracey.Cunningham@bhddh.ri.gov

During 2017, 22 providers in the performance-based program offered employment services to 448 clients, Cunningham said. A total of 169 individuals found jobs, with only 24 of them losing employment, Cunningham said.

In the second year of the program, which offers enhanced performance payments, there are a total of 26 providers anticipating that they will be able to serve a maximum of 623 clients, she said. BHDDH has set aside $6.8 million for the performance-based supported employment program in the next budget.

But there have been difficulties training enough staff to provide supported employment services. BHDDH data presented at the forum showed a 31 percent vacancy rate in the full complement of staff – 234 positions – needed to maximize the program.  

Specially trained job coaches and other employment-related specialists for the performance-based program come from the direct care workforce, which is poorly paid and experiences high turnover.

The performance-based program is intended to boost the number of adults with developmental disabilities in regular jobs to help the state comply with the consent decree.

During 2017, the state met or exceeded the consent decree targets for employment in two of three categories: those who historically have spent their days in center-based care and sheltered workshop employees, according to figures provided by BHDDH.

There is one sheltered workshop left in Rhode Island and it will close sometime this year, said Tina Spears, the new consent decree coordinator.

The state has been lagging for some time in the number of young adults it has helped place in jobs. By now it was to have placed all of a total of 413 young adults recognized by the consent decree as having left school between 2013 and 2016.

At the end of 2017, the total number of  job holders in this young adult group was 177, according to the BHDDH data.  

 

 

RI Revises Supported Employment; Providers And Families Invited To Information Sessions

By Gina Macris

The second year of a program to help Rhode Islanders with developmental disabilities find jobs will offer extra bonus money to encourage financially strapped private agencies to seek new clients, particularly young adults.

Zanchi     Photo by Anne Peters  

Zanchi     Photo by Anne Peters  

The state began the “performance-based” program last January to avoid federal court sanctions for failing to implement a 2014 consent decree aimed at giving individuals with disabilities greater access to regular jobs and integrated non-work activities.

“We’ve learned a lot in this first year,” said Kerri Zanchi, Director of the Division of Developmental Disabilities (DDD). Zanchi, the first developmental disabilities professional to head DDD in at least a decade, began work in Rhode Island shortly after the supported employment program kicked off a year ago.

Zanchi elaborated on the status of the program, in which private agencies provide supportive job-seeking and job-retention services, during a telephone interview Jan. 5.

She said that in the initial contract year, which ended in December, 22 private agencies offered supported employment services to about 440 adults with developmental disabilities, with about 150 gaining employment at minimum wage or higher.

In the coming year, Zanchi said, she hopes the opportunities for enhanced performance payments and other changes prove “more responsive to the needs of consumers” and that the number of providers will expand. 

DDD will host information sessions Monday, Jan. 8 and Friday, Jan. 19 for private providers seeking to renew their contracts or establish new ones and for so-called “self-directed” families, who take on the design and direct supervision of a loved one’s activities. Few of these families have been able to participate in the performance-based program during its first year, according to anecdotal reports. 

A key addition to the menu of performance payments to providers is a bonus of $600 for each new client who signs on for employment-related services, or $1,000 for young adults who left high school between 2013 and 2016. These bonuses are due once the new client has received 20 hours of employment-related supports.

The consent decree places particular emphasis on young adults with intellectual or developmental disabilities, because investigators for the U.S. Department of Justice believed they are at heightened risk for isolation and segregation as they move from high school to adult services.

The consent decree draws its authority from the Olmstead decision of the U.S. Supreme Court, which reinforces the mandate for integrated services in the Americans With Disabilities Act

The young adult group also is the only segment of the consent decree population – more than 3,000 individuals altogether –for which the state is significantly out of compliance with court approved targets for job placement.

A reluctance among established agencies to expand their client roster has resulted in limited choices for the families of young adults; prompting them to direct their own services. But that choice also has made it generally more difficult to access the supported employment program, according to various reports about families’ experiences during the first year of the program.

Providers have told state officials that in many cases they can’t take on new clients because of low reimbursement rates and high staff turnover, and because the bonuses of the initial cycle of the supported employment program did not pay for the costs both of training new workers, as well as providing the actual services.

The graduation rate for a tuition-free training program offered by the Sherlock Center on Disabilities at Rhode Island College is 40 percent, with students dropping out for a variety of reasons, most of them related to high turnover and short-staffing at the provider agencies.  

In the second year, providers can expect an increase of $460 for training each new job coach, from $350 to $810 per trainee, according to materials from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which were released by Zanchi.

The information sessions will be at the Arnold Conference Center in the Reagan Building of the Eleanor Slater Hospital, 111 Howard Ave., Cranston, Monday, Jan. 8, from 2 to 4 p.m. and Friday, Jan. 19, from 9 to 11 a.m.

In 2016, just after a U.S. District Court judge ordered the state to come up with a new “reimbursement model” that would give adults with developmental disabilities access to regular jobs. Shortly after that, the General Assembly allocated $6.8 million in state funds to finance what became the performance-based supported employment program.

Besides the bonuses, the revised program includes increased allocations – a total of $8,000 a year per client, according to the latest BHDDH figures – for provider reimbursements for employment services.

Zanchi said that the original $6.8 million allocation will continue to fund the first six months of the second year of the performance-based program until June 30, when BHDDH expects to return an estimated $2 million to the state.

The return of the estimated $2 million in unused supported employment funds was part of a deficit reduction plan outlined by BHDDH director Rebecca Boss Nov. 30 to close an estimated $15.9 millionf departmental deficit, including $12 million in developmental disabilities.. But it is well-understood within BHDDH that from a fiscal perspective, supported employment must continue because it is a court-ordered service.  

BHDDH has requested new funding, with projected utilization based on the first full year of programmatic experience, for the state’s next fiscal year beginning July 1, Zanchi said.

She did not say how much BHDDH  will seek for supported employment. Governor Gina Raimondo is expected to submit her budget to the General Assembly later this month.

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

By Gina Macris   

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

Rebecca Boss                       Photo By Anne Peters

Rebecca Boss                       Photo By Anne Peters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

By Gina Macris

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

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

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

  • Increased costs attributed to an updated assessment for clients of the Division of Developmental Disabilities, the Supports Intensity Scale–A, or SIS-A, which is generally regarded as more accurate than the previous version in capturing individuals’ support needs, particularly for those with complex medical and behavioral issues.
  • An increase in supplemental authorizations that represent successful appeals of funding levels awarded through fiscal calculations made from the results of the original SIS or the SIS-A.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Click here for the BHDDH first quarter spending report.

Therap Gets RI Contract For DD Electronic Records

By Gina Macris

Therap Services of Waterbury, CT., a specialized information technology company, has won a contract worth $1,320,000 over three years, or $440,000 a year, to create an electronic case management system for the Rhode Island Division of Developmental Disabilities (DDD).

The conversion to electronic records is expected to make record keeping much simpler for state social workers and private providers and to greatly improve data collection for the U.S. District Court. Through an independent monitor, the Court is tracking implementation of integrated, community-based services for adults with developmental disabilities under provisions of a 2014 consent decree enforcing the U.S. Supreme Court’s Olmstead decision, which reinforces the Americans With Disabilities Act.

Kerri Zanchi, Director of Developmental Disabilities, could not say exactly how long the new system will take to roll out but estimated it might be 18 months to two years before it is fully implemented. Some parts of the system might be operational earlier, she said.

The electronic case management system will give state social workers and private service providers shared online access to the records of each client receiving federal and state-funded Medicaid services through the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Zanchi said Therap also offers a module to give families access to records, “but what it does and how we’ll use it, we’re not there yet. I couldn’t speak to that today,” she said in an interview in mid-September. A family module would not cost the state additional money, according to a spokeswoman for Zanchi.

Zanchi said DDD wants to build an electronic record system that responds to current operations and consent decree requirements.

“Our (DDD) system is changing and as it is changing we need to be evaluating the outcomes,” she said.

There is a work group which includes both state social workers and private service providers to help identify “the specific data needs” that must be built into the electronic records system, she said.

Rebecca Boss, the BHDDH director, said that “as much as we can do to expedite this, we will. We want to have this up and running as soon as possible.”

The lack of adequate data has made it difficult for the U.S. Department of Justice and the consent decree monitor to evaluate the state’s implementation efforts. About a year ago, the state devised an method of working around the limitations of the existing 30-year-old data system that can respond to specific questions from the monitor or the DOJ, but not on a real-time basis.

This patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College.

Therap and seven other vendors submitted applications for the electronic records contract in the fall of 2016. Zanchi and Boss said the contract was awarded at the end of the summer.

Therap also holds an electronic records contract for the investigatory unit of BHDDH, which deals with complaints of neglect and abuse. That contract was awarded in 2016, but no other details were immediately available.

Therap’s website describes the company as the leading provider of electronic health records for people with intellectual disabilities, with customers in 50 states and foreign countries.

This article has been updated with additional details on the Therap contract and those working with Therap to roll out the system.