Historic Investment in DD Passes RI House

By Gina Macris

UPDATE: The Rhode Island House of Representatives approved developmental disabilities reform as part of a $14-billion state budget on a 68-3 vote June 9, sending it to the Senate.

The Rhode Island House of Representatives is expected to vote Friday, June 9, on a whopping $75 million for the state to reorganize its services for adults with developmental disabilities to comply with a federal consent decree deadline in a year’s time.

Total spending for developmental disabilities would jump from about $377.3 million to $469.1 million, an increase of about $91.8 million in an overall budget of $619.6 million for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. Developmental disabilities spending includes about $32.4 million for a state-run network of group homes, which is receiving an increase of about $3.1 million.

The reorganization includes a wage increase for frontline workers, from an average of $19 to an average of about $22 an hour, and expanded funding for more staffing to permit all daytime services to be offered in the community.

All adults receiving support from the Division of Developmental Disabilities — roughly 4,000 individuals — will be eligible for employment-related services in addition to other assistance included in basic individual budgets.

With several federal court orders in play, the House Finance Committee voted June 2 to send the massive investment in services for adults with developmental disabilities to the full House as part of an overall $14-billion state budget.

The new developmental disabilities system, which promotes the treatment of each participating adult as a unique individual, would replace an approach that incentivized group care in day centers and sheltered workshops and depressed the wages of caregivers for a decade.

In 2014, the state accepted a federal Department of Justice finding that its system for serving adults with development disabilities violated the Integration Mandate of the Americans With Disabilities Act. Rhode Island consented to overhaul that system within ten years, a transition requiring services to be individualized and made available in the community at large which, in almost all cases, is the least restrictive environment that is therapeutically appropriate.

But the state made only incremental changes until 2021, after Chief Judge John J. McConnell Jr. of the U.S. District Court found that a decade-long shortage of workers, exacerbated by the COVID-19 pandemic, was the single biggest barrier to implementation of the consent decree.

With average wages then hovering around $13.18 a year, McConnell issued an order in January, 2021, saying the state must raise the minimum wage for direct care workers to $20 an hour by 2024. But the needle did not move until the judge issued another order requiring the state to negotiate with private service providers and families operating their own programs to arrive at an interim pay increase in the forthcoming state budget.

The General Assembly raised the minimum wage to $15.75 an hour on July 1, 2021 and then to $18 an hour effective July 1, 2022. The budget up for the House vote tonight would raise the minimum wage to $20 an hour, the last step in complying with McConnell’s court order.

Other court orders resulted in a rate review of the entire developmental disabilities system and an initiative to attract new workers to better-paying and more career-oriented jobs in caregiving, among other things.

There appears to have been ongoing negotiations between the ,court and the state on the budget continuing as late as April, when Governor Dan McKee amended his original proposal and asked the General Assembly for more money to fund 100 percent community-based care instead of 60 percent. Until then, the plan was to continue offering 40 percent of services in group day care centers, an approach which is less staff-intensive than providing individual outings in the community.

Still to be answered is whether the state, through its private service providers, can translate the expanded funding into a smooth-running inclusive new system of services in time to meet the consent decree deadline of June 30, 2024.

The director of the trade organization for most private service providers has asked the public to urge their legislators to support funding not only for adults with developmental disabilities but also for vulnerable children.

The trade organization, the Community Provider Network of Rhode Island (CPNRI), is part of a coalition of organizations supporting an estimated 100,000 people eligible for various home and community-based services that have experienced the same labor shortages as the sector focused on adults with developmental disabilities.

Companion bills in the House and Senate would allocate $200 million of federal-state Medicaid funding to shore-up home and community-based services statewide during the coming year while the state’s health insurance commissioner completes a rate review similar to the one conducted for developmental disabilities. Those bills have not advanced.

The CPNRI director, Jenna Husted, applauded the “major investments in adults with disabilities and those that support them.”

“We are, however, concerned about the lack of investment in children with disabilities. Providers of children with disabilities are facing unique challenges and it is our responsibility to provide them the necessary support to thrive.

“We urge legislators to protect the major investment in adults with disabilities, and include investments for children with disabilities,” Husted said. “Together, we will become a more inclusive State.”

The House session is expected to begin at 2:30 p.m., according to the House Calendar.

BHDDH Seeks $18 Hourly Pay For RI DD Workers; $119M In DD ARPA Funding

By Gina Macris

Rhode Island’s developmental disabilities agency seeks to raise the pay of direct care workers to $18 an hour beginning July 1, 2022, a 14 percent hike over the current hourly rate of $15.75.

The raise would be covered by a $44.5 million increase in federal-state Medicaid funding for the privately operated developmental disability service system, according to a budget request submitted to Governor Dan McKee for Fiscal Year 2023 by the state Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH).

Within an overall agency budget of $585.9 million, representing a 12 percent increase, the Division of Developmental Disabilities would get nearly $380 million. That sum would cover both the privately-operated system of services and a state-run network of group homes. Private providers would get a total of about $352 million in federal-state Medicaid funding, about $44.5 million more than the current budget of $307.9 million. The budget for the state-run group homes would remain relatively flat, at about $28 million.

In an Oct. 1 budget letter to the governor, BHDDH Director Richard Charest wrote, “The Division of Developmental Disabilities (DDD) continues its commitment in complying with the terms of the 2014 federal consent decree and providing integrated employment and day services.”

On Oct. 1, BHDDH was facing the prospect of a contempt hearing in U.S. District Court that was to start today, Oct. 18, over continued failure to comply with the 2014 civil rights agreement. But at the same time, the department was negotiating with an independent court monitor to reach a settlement that would avoid hefty fines proposed by the U.S. Department of Justice. On Oct. 13, five days before the hearing was to start,Chief Judge John J. McConnell, Jr. canceled it without explanation. Any settlement has yet to be announced.

The pace of job placements required by the consent decree has slowed, from 78 percent of the target number spelled out in the agreement for January 1, 2019 to 67 percent of the target for January 1, 2021. A lack of services in general, and employment-related support in particular, has been attributed to an acute shortage of direct care workers.

For years, all sectors of the human services have been affected by a workforce shortage, which has been exacerbated by the COVID-19 pandemic. But only programs serving people with developmental disabilities operate with federal oversight in Rhode Island. Chief Judge John J. McConnell Jr. of the U.S. District Court has ordered Rhode Island to raise direct care worker wages to $20 an hour by 2024 to attract new staff.

In its budget request, BHDDH is also asking for a one-time investment of $119.3 million in federal coronavirus relief funds from the American Rescue Plan Act (ARPA) for the developmental disabilities system. That figure represents more than 10 percent of of the $1.13 billion in ARPA funding available to Rhode Island, the only state in New England which has not yet spent any of its allocation.

The $119.3 million total includes capital expenses of nearly $74.5 million for repair and construction of residential and therapeutic facilities and about $44.9 for operational and program changes over the next few years. All the money would be spent by the end of 2025. The proposal acknowledges chronic underfunding of the developmental disabilities system.

The investments are intended to shore up existing services and facilities to achieve a “more holistic, individualized, and community-based system of supports” to comply not only with the consent decree but with the separate Medicaid Home and Community Based Services (HCBS) Final Rule, which requires integration for all Medicaid and Medicare-funded services, including residential programs.

Both the consent decree and the HCBS Final Rule draw their authority from the Olmstead decision of the U.S. Supreme Court, which has ruled that people with disabilities have the right to receive services in the least restrictive environment that is therapeutically appropriate.

The portion of the ARPA request aimed at programmatic and operational changes assumes that there will be a shift from the current fee-for-service reimbursement method for private providers to a “value-based” reimbursement model, although that change has yet to be defined. BHDDH is expected to award a contract in the next two weeks for a consultant’s study to examine rates and methods of reimbursement. The successful bidder would have six months to complete the work.

Within the $44.9 million ARPA request for operations and programs, BHDDH is seeking:

• $25 million for supported employment services, including efforts to bring more services to “BIPOC communities,” a reference to Black and Indigenous peoples and other people of color.

• $17,350,000 to help private providers arrange more integrated housing options, staff training, assistance in tracking the providers’ own performance according to certain measures, and technologies for shifting from fee-for-service to “alternative based payment models.” This segment of the request assumes each of 34 service providers in Rhode Island will get $500,000. It also would pay for a contractor to manage the program.

• $1,150,000 for a community-based mental health intervention response team for people who have both intellectual or developmental disabilities and behavioral issues that put them at risk of hospitalization. Plans for the model program, called START (Systemic, Therapeutic, Assessment, Resource, Treatment) have already been developed. It has been identified as a best practice by the National Academy of Sciences Institute of Medicine.

• $1 million for information and education for service recipients for and their families to ensure better access to services, particularly for people of color, who have been underrepresented in the service caseload.

The $75 million in capital investments would include:

• $60,350,000 in repairs to state-owned provider facilities. Deferred maintenance in group homes “is a drain on state and provider resources (and) a barrier to individuals aging in place,” the proposal said. The condition of some facilities is “not conducive to making individuals feel safe and valued in their homes and part of the larger community,” it said.

• $8,130,000 to build facilities to house 30 young people with developmental disabilities who are making a transition to the adult service system. Currently, these youngsters, particularly those who also have emotional or behavioral issues, languish in facilities for children or in hospitals, creating a backlog in the youth system.

• $6 million for a 24-hour community residential program for people with developmental disabilities being discharged from a hospital or other institution who still need more specialized care than is offered by a regular group home. Such a program would ensure that services are provided in the least restrictive setting as required by HCBS, the proposal said.

Taken together, “these investments will lay the foundation for a DD system that focuses on supporting participants in a way that promotes community integration and development of personal networks and circles of supports,” the proposal said.

It will require a “major shift in thinking and business models” to move from “caretaking” and programs developed by providers to “a focus on what individualized supports people need to be as independent as possible.”

To read the entire BHDDH ARPA proposal for developmental disabilities, click here.

Rebecca Boss, Director Of RI BHDDH, To Step Down Dec. 31

By Gina Macris

Rebecca Boss * Photo By Anne Peters

Rebecca Boss, Director of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for three and a half years, will step down at the end of this month - in three weeks - to pursue “new opportunities,” according to a departmental announcement December 11.

As director, Boss has supervised the state’s services for adults with developmental disabilities, mental illness, and substance abuse disorders. She has brought stability and effective leadership to the Division of Developmental Disabilities, becoming actively engaged in implementing a 2014 Olmstead federal civil rights consent decree, which calls for a transformation of daytime services for some 4,000 adults with developmental disabilities over a 10-year period.

During her tenure, Rhode Island has emerged as a national model for its response to the opioid crisis, and BHDDH has begun a campaign to combat the stigma of mental illness and substance. But correcting chronic shortcomings at the state hospital has proved problematic. Early in Boss’ tenure, the Eleanor Slater Hospital in Cranston nearly lost its accreditation. And last month, state and federal inspectors found widespread deficiencies in standards of care at the Zambarano unit of the hospital in Burrillville.

In a statement, Boss said, “I have truly enjoyed the 15 years I have spent at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals serving some of Rhode Island’s most vulnerable individuals.”

“I’m grateful for the opportunity I’ve had to work for the Governor and the people of this state. We’ve built an amazing team of compassionate staff who are dedicated and committed to this work,” she said.

Boss, previously the department’s top official in behavioral healthcare, became acting director in mid- 2016, succeeding Maria Montanaro, and was confirmed by the Senate in May, 2017.

Governor Raimondo said, “Becky Boss is a dedicated public servant, a compassionate leader, and a champion for Rhode Island’s most vulnerable residents.”

“I’m grateful for her 15 years of service to our state, especially her work as Director of BHDDH the past three and a half years. There’s no question that Rhode Island has benefitted from her leadership,” Raimondo said in a statement.

State Sen. Louis DiPalma, D-Middletown, the General Assembly’s most prominent advocate for people with developmental disabilities, said Boss is well respected and “will be missed.” In his 11 years in the Senate, DiPalma said, she is the only gubernatorial nominee he has testified for.

A BHDDH spokesman said the details of Boss’ “next steps will be forthcoming.” The search for a new director will begin immediately, he said. The spokesman could not immediately say whether there will be an interim director. Boss’ annual salary is $141,750.

In the field of developmental disabilities, Boss is leaving in the middle of an 18-month long rate review and analysis of the BHDDH fee-for-service reimbursement system for private service providers. The existing payment methods, enacted in 2011, have been criticized both by the U.S. Department of Justice and the former court monitor in the consent decree case.

Another big initiative underway in the Division of Developmental Disabilities is an effort to reach consensus with the community on the parameters of third-party case management which would satisfy rules of the federal Centers for Medicare and Medicaid Services for programs of care that are free of conflict among funding interests, direct service providers and case managers. The bureaucratic name for the initiative is “Health Home,” but it is neither a home nor a health care center.

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

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

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

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

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.