Federal Judge Asks RI For Quick Action To Increase DD Funding And Avoid Court Order

John J. McConnell , Jr.

By Gina Macris

Chief Judge John J. McConnell, Jr. has made it clear he is prepared to use the power of the U.S. District Court, if necessary, to ensure the state of Rhode Island provides adequate funding for adults with development disabilities.

That population of about 4000 people is protected by a 2014 civil rights agreement set to expire in 2024, assuming the Court approves.

Time is already drawing short for the state to make the changes necessary to achieve compliance by the 2024 deadline. The process would require approval by the General Assembly and would have to be running smoothly for a year before the state is released from federal oversight.

But the COVID-19 pandemic has added urgency to the situation, because the state’s compliance depends on some three dozen private service providers that are in such shaky ground financially that they won’t survive the next six months without extra cash.

That was the picture presented to McConnell at a hastily-called virtual court hearing on Zoom Nov. 24.

McConnell gave state officials and advocates until Dec. 18 to figure out a solution to providers’ short-range fiscal problems.

McConnell said he saw “two levels of crisis:”

• an immediate one that threatens the viability of social services for adults with developmental disabilities over the next six months, with conditions changing “second by second, moment by moment, and day by day.”

• a system-wide crisis around the state’s ability to meet the requirements of the 2014 consent decree.

Since last summer, the state has been engaged in a court-ordered planning effort to devise solutions to the systemic issues and present McConnell with a long-range implementation plan by June, 2021.

But the judge said he called Tuesday’s hearing in response to a preliminary fiscal report from an independent monitor, who said the burdens of coping with the coronavirus pandemic posed more immediate threats to service providers.

Cooperative Solution Preferred

McConnell asked the monitor, A. Anthony Antosh, to convene a “collaborative” public-private group to come up with an immediate funding solution by December 18. The collaboration should include state officials, lawyers for the U.S. Department of Justice, and representatives of the community, including the head of a provider trade association, Tina Spears, McConnell said.

Lawyers for the state, including Kathleen Hilton and Marc DeSisto, framed it as a continuation of an active collaboration that already has resulted in one hazard pay initiative.

McConnell said he much preferred a solution devised by the state and its partners in the community, rather than having to resort to a court order.

But he made it clear that one way or another, he considers it his responsibility, as a judge in the “third and co-equal branch of government,” to protect the population with intellectual and developmental disabilities in Rhode Island.

“The advisable way is for the good and smart people to sign off and figure out how to do it,” the judge said.

After hearing from budget director Jonathan Womer, health and human services secretary Womazetta Jones, and other state officials, McConnell said “there is no doubt we have an awesome team in the executive branch whose hearts and minds and souls are in the right place.”

McConnell acknowledged that “quite a bit of money” ($20 million) has been allocated to developmental disabilities during the pandemic, but he said “it has become inadequate as the system currently exists.”

The state “may have fiscal handcuffs on,” as Womer, the budget director, explained, but “for the Court, it’s of no import where the money comes from.”

The state and “all its entities” are part of a consent decree that enforces the civil rights of adults with developmental disabilities under the Americans with Disabilities Act, McConnell said.

“But make no mistake,” he said. If necessary, “the Court will use all its powers to order the state and all its entities to come up with the money,” he said.

Effects Of Pandemic “Unrelenting”

The trade association representative, Tina Spears, director of the Community Provider Network of Rhode Island, (CPNRI) illustrated the current problem in human terms.

In the first three weeks of November, a single provider agency experienced COVID- 19 infections in four of its 18 group homes. Sixteen staff members and eight group home residents tested positive, with four residents requiring hospitalization. Three staffers had to quarantine at home, and one staff member died, Spears said.

Meanwhile, the agency’s day programming, which included expansive work-related supports and other services, is running at 30 percent capacity, she said, running into debt at an exponential rate.

“The situation on the ground is unrelenting,” she said.

Kayleigh Fischer, Director of Budget and Finance for EOHHS, laid out the various federal initiatives, totaling $20 million, that have helped service providers stay afloat during 2020.

And Womer, the budget director, explained the fiscal challenges posed by COVID-19, which has decimated revenue and has saddled the state with a projected budget deficit of $250 million to $275 million by the end of the fiscal year in June, depending on who’s counting.

“It’s confusing. There are a lot of moving pieces and a lot of federal guidance that’s constantly changing,” he said.

“We have more restrictions on spending now because of the pandemic,” Womer said. “We are reducing spending anywhere we can to contain the deficit,” he said.

The state can spend federal grant money like the $1.6 billion allocated to Rhode Island for coronavirus relief, Womer said, but among the exclusions are spending for workforce bonuses, as well as replacing state revenue in the federal-state match for the Medicaid program.

Medicaid is the program that funds the developmental disability service workforce.

Spears Highlights Below-Market Funding

Spears acknowledged that without the emergency funding the state has allocated so far, the developmental disability service system already would have folded.

She said she appreciates the fiscal challenges Womer described, but “this has been the rationale for underfunding our workforce for the last decade.“

In 2011, the state deliberately set reimbursement rates for private providers of developmental disability services below market costs, Spears said. “This fact cannot be overstated,” she said.

The rate-cutting, which resulted in layoffs and sharp wage reductions, has been documented in an exhaustive $1.1 million study commissioned by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH), and by a separate special legislative commission.

Over time, Spears said, the flawed fiscal foundation of the reimbursement model has made it increasingly difficult for providers to recruit and retain qualified workers, a situation that has only been exacerbated by the pandemic.

Today’s average pay for direct care workers is $13.18 an hour, but provider agencies say they must pay $25 to $30 an hour to get workers to go into COVID-positive group homes or homes where residents are in quarantine, according to Antosh, the court monitor.

Antosh has proposed the state deploy $2 million a month from unused developmental disability funding to boost the pay of direct care workers to $20 an hour and cover other expenses related to COVID-19.

Separate from Antosh’s proposal, Spears said, CPNRI has asked Governor Gina Raimondo for COVID Cares Act relief funding for incentive pay for workers in coronavirus-positive group homes and for emergency relocation funds. These funds would be used for temporary quarters to make sure that COVID-negative group home residents can be separated from housemates who are infected.

She did not provide additional detail on that pandemic-related funding request.

Instead she focused her remarks during the hearing on separate recommendations for addressing the structural problems in the fee-for-service reimbursement model.

The state should raise entry-level wages to $17.50 an hour immediately, with a boost to $20 an hour in the fiscal year beginning next July 1, she said. Spears said the state has received an increase in the federal share of the federal-state Medicaid program which has not been passed along to service providers.

In addition, there should be an expedited, yet comprehensive, review of the rate structure that includes the cost of implementing policies mandated by the 2014 consent decree, Spears said. The current rate structure does not support the agreement, she said. She said changes in the rate structure should be ready to be incorporated in the budget that begins next July 1.

The DOJ has found that the overhaul of the developmental disability service system adopted in 2011 incentivized segregated care, in violation of the Integration mandate of the Americans With Disabilities Act.

During the court hearing, Womazetta Jones, the Health and Human Services Secretary, said she wants to work with service providers to do what is feasible and equitable, given all the needs of vulnerable populations.

McConnell replied to Jones:

“As a citizen, I have long admired your service,” he said.

But he pointed out that Rhode Islanders with developmental disabilities have a protection that other vulnerable populations do not.

The DOJ found, and the state agreed, that those with developmental disabilities have experienced violations of their constitutional rights “that can’t continue,” the judge said.

“I don’t want to disagree with anything, but I want to focus on why we are here,” McConnell said.

Olmstead Monitor: RI Needs Overhaul Of DD System To Comply With 2014 Agreement

By Gina Macris

During the next three years, Rhode Island must completely restructure its services for adults with intellectual and developmental disabilities and increase financial support accordingly to fully comply with a federal civil rights consent decree by the 2024 deadline.

A. Anthony Antosh

That is the conclusion of an independent federal court monitor, A. Anthony Antosh, in an Oct. 7 report to Chief Judge John J. McConnell, Jr. of the U.S. District Court.

At McConnell’s direction, Antosh says he’s also working on a dollar figure for the cost of compliance, using an outside $1.1 million analysis of existing services commissioned by the state itself.

The state agreed, under the consent decree in 2014, to end its reliance on sheltered workshops and group day care centers and instead put adults with developmental disabilities in the driver’s seat when choosing a path in life, with an emphasis on regular employment and participation in community activities.

The last sheltered workshop closed in 2018, but many of the other goals of the consent decree have remained elusive, and Judge McConnell has grown impatient with a lack of funding he says is necessary to lay the foundation for compliance by the time federal oversight is scheduled to expire in 2024.

John J. McConnell, Jr.

“If anybody couldn’t tell, I am obsessed with the issue of funding as essential for us to get there,” McConnell said during a virtual hearing in July.

“If we don’t come up with a way to systemically support the (service) providers, then the whole thing will be meaningless,” McConnell said.

He has said he is prepared to tell the state to “find the money” to comply with the consent decree. State officials who control the purse strings must participate in the redesign of services, the judge has said.

In the most recent monitor’s report, Antosh set the tone for his recommendations by saying that compliance is “not found in a narrow analysis of the benchmarks of the Consent Decree, but is rooted in defining the structural changes that need to occur in order that the goals of the Consent Decree can be achieved.”

In bold print, he highlighted the fact that the outside analysis of the existing system found that most of the private service providers are “fragile and profoundly undercapitalized.”

In a separate report, the state responded to a court order that it address 16 fiscal and administrative barriers to the integration of people with developmental disabilities into their communities as mandated by the consent decree. The summary is the first of six progress reports the state must make to Judge McConnell by next June on its planning effort for long-range reform.

In its report, the state set a deadline of March, 2022 to overhaul its fiscal system. The changes include the elimination of three practices that for years have been identified as problematic by families and providers:

• staffing ratios that discourage community integration, so that in some cases, one worker must supervise up to five people on an outing, whether or not those people want to be there.

• documentation of staff time in 15-minute increments, which providers say diverts significant resources that otherwise could be used for direct services.

• Allocation of a certain percentage of services for segregated facility-based activities.

Alluding to the budget uncertainties caused by the ongoing Covid-19 pandemic, the state’s seven-page summary cautions that the planning efforts are “dependent upon the continuation of current state staffing and budgetary levels.”

Monitor’s Budget For Reform Coming “Soon”

McConnell has asked Antosh to analyze current funding and make a dollars-and-cents recommendation for the cost of implementing the needed comprehensive changes.

Antosh said that report will be completed “soon.” He said he has begun that work, relying primarily on data drawn from an 18-month study done by the New England States Consortium Systems Organization (NESCSO) for the state’s disability agency.

The 143-page NESCSO study presented a number of findings and options for change but made no recommendations, at the behest of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Antosh said there is a need for systemic restructuring of existing services and supports, which are now “essentially based on group activities that occur in a blend of facility and community settings.”

The situation is exacerbated by a difficulty in recruiting and retaining high quality staff and by the COVID-19 pandemic, which in emphasizing the health risks of large gatherings has “reinforced the diminishing value of facility-based group services,” Antosh said.

The pandemic also has led to a setback in the progress made in the area of employment for adults with developmental disabilities. In June, as the state was beginning to reopen, only 31 percent of those who previously held jobs were still actively employed, Antosh said. (Some on furlough have since returned to work.)

Among work crews hired for large scale commercial cleaning or laundry operations and the like, only about half were working, he said.

The statistics underline a need for “new and intensified approaches to job development,” he said. “What is needed is a new model for providing supports that is more individualized, community based, and uses funds and supports from an increased variety of sources,” including the state’s Department of Labor and Training, Antosh said.

Family Hesitation About Integration

While the gears of state government are focused on moving Rhode Island into compliance with the federal government’s mandate of integrating individuals with developmental disabilities into the larger community, more than a third of the families with an adult son or daughter who would benefit say they oppose or are not yet convinced that the push toward employment is worthwhile.

The pandemic aside, significant numbers of families also express opposition or hesitation about their loved ones’ increased participation in community activities.

For Antosh, who included survey results of families as part of his report, the statistics underscore the need for adolescents to experience work-related and social activities in their communities as part of their education and for families to receive more information about the breadth of available opportunities.

It is perhaps most telling that among families of high school students, who are more likely than their older peers to have had internships and community experiences as part of their education, only 3 percent were opposed to jobs for their sons and daughters and 10 percent said they weren’t sure. Two thirds of families of adolescents said they believed the young people should have jobs as adults. Other parents of high school students – about one in five- said their son or daughter had to deal with other challenges before turning to employment. This is typically the case for those with chronic health problems.

Source: Monitor’s Report To U.S. District Court 10-7-20

The 2014 statewide consent decree draws its authority from the Integration Mandate of the Americans With Disabilities Act, which was reinforced by the Olmstead decision of the U.S. Supreme Court. The high court said that states must deliver services to all persons with disabilities in the most integrated setting that is therapeutically appropriate, and it presumed that setting to be the community.

In 2014, the U.S. Department of Justice found that the state violated the Integration Mandate by funneling high school students from segregated educational programs with low expectations to a lifetime of isolation in sheltered workshops and day care programs. In signing the consent decree, the state agreed to correct the violations by 2024. (A preliminary case against the state and the city of Providence in 2013 was merged into the statewide consent decree a year ago after Judge McConnell found the city and its school department had turned around a segregated high school program for students with developmental disabilities, leaving only the state as the defendant.

Antosh outlined several overarching features of successful implementation of the consent decree, including these:

• Each person will have the supports necessary to enjoy a self-determined, self-directed life based on work and non-work activities in the community.

• Private provider agencies will have the funding, staffing and other resources they need to meet the support needs of all persons receiving funding through the Division of Developmental Disabilities.

• Every adolescent and adult with intellectual or developmental disabilities will have the information and guidance they need to navigate a simpler and more efficient system of services.

• All adolescents and young adults leaving school will have had enough transitional work-related and non-work experiences in the community to make informed choices about jobs and careers, as well as a plan to direct their own programs or sign on with a provider organization.

Antosh recommended that the state develop a three-year budget strategy, beginning July 1, 2021, to “stabilize” developmental disability services and provide sufficient funding to implement the consent decree.

The monitor’s recommendations include a new, formal role for the Department of Labor and Training (DLT), which until now has not been a part of the multi-agency state team responsible for official responses to the court.

Antosh said DLT should immediately join BHDDH, the state Department of Education, the Department of Human Services, and the Executive Office of Health and Human Services in working on consent decree compliance.

DLT also should include all teenagers and adults with developmental disabilities in the workforce initiatives it administers, the monitor said.

By Jan. 1, 2021, the state should create an “Employer Task Force” to promote employment of those with developmental disabilities, Antosh said. The task force would identify relevant workforce trends and advise state officials and provider organizations about ways to reach out to prospective employers and offer employers incentives and support.

By April 1, 2021, the state must identify every possible source of funding that could support the consent decree and describe ways these sources can be “braided” to support the various requirements of the agreement.

As for private providers, the backbone of the service system, Antosh set a deadline of April 30, 2021 for them to develop action plans for the future. There are 36 provider agencies, most of them offering both day and residential services. In their plans, providers should redefine the support area that will be their focus, address consent decree issues, make budget projections and include internal quality improvement programs.

Just as the state has established five workgroups to address fiscal and administrative problems, Antosh recommended the state create additional issue-oriented work groups whose members are drawn from the ranks of state officials and community organizations, like the Employment Force Task Force.

One group would develop strategies to stabilize the workforce by increasing salaries, elevating professionalism through training, and creating a career ladder.

Other groups would address specific plans for:

• putting individuals at the center of mapping out long range and short-term goals for their future and strategies for achieving them

• ensuring young people have a smooth transition from high school to adult services,

• creating new models for providing services and supports for employment and community-based activities.

• enhancing the use of technology as a support strategy

• Developing alternative transportation options, including stipends that allow individuals to arrange their own rides

• Improving outreach to families, including those speak languages other than English and come from diverse cultures.

To read the full monitor’s report, click here. To read the state’s report, click here.

Photos by Anne Peters

RI DD Providers Seek Rate Hikes To Cope With Unprecedented Costs and Risks To Workers

By Gina Macris

Rhode Island’s providers of developmental disability services can expect help from state coffers as early as this week to compensate for losses resulting from the coronavirus, but those emergency payments are no more than the private organizations would have received if they had been able to conduct business as usual, according to the General Assembly’s chief advocate for people with disabilities.

The state’s developmental disability agency announced March 26 that $15.4 million has been set aside for up front “retainer payments” to private service providers over the next three months, including $7.4 million in state revenue and the rest in federal Medicaid funding.

State. Sen. Louis DiPalma, D-Middletown, says providers need more money, and a trade association representing them has asked for an hourly wage increase of $4.55 for caregivers of adults with developmental disabilities, who tend to be at greater risk than the average population for becoming infected with the coronavirus.

The hike, to an average wage of $17.73 an hour, would greatly narrow the pay gap between privately-employed direct care workers and those in state-run group homes, who now make a starting wage of $18.75, with state employee benefits, for the same work.

Meanwhile, the U.S. District Court in Rhode Island has become involved in discussions between state human services officials and the federal Medicaid program in an apparent effort to get federal relief for people and support staff in the developmental disabilities system, among other segments of the population that rely on Medicaid. The most concrete evidence of the Court’s involvement is an order issued by Chief Judge John J. McConnell, Jr. March 27 which seals “until further notice” seven draft documents having to do with the state’s Medicaid plan.

DiPalma, learning of the titles of the documents in the court order, said in a telephone interview that the news they were sealed surprised him, because the documents were shared among leaders in the developmental disabilities community for comment a week ago in lieu of a public hearing, given the unprecedented emergency of the COVID-19 pandemic and social distancing rules imposed by Governor Gina Raimondo.

The crisis threatens the viability of the private developmental disabilities system, which is the backbone of the state’s efforts to comply with a 2014 civil rights consent decree mandating integration of adults facing intellectual challenges in their communities. McConnell oversees implementation of the consent decree, which runs through 2024.

Daytime activities linked to compliance with the consent decree have shut down, and provider agencies have been forced to lay off staff because the employers can’t bill the state for the services. A spokeswoman for CPNRI, the trade association, could not immediately say how many layoffs have occurred.

Some agencies are estimating losses for the month of March up to $198,000, said the CPNRI spokeswoman, executive director Tina Spears. She said the losses are “destabilizing our ability to provide other critical services” throughout the crisis, with costs that exceed established funding levels.

Preliminary estimates from CPNRI members indicate their costs will exceed their annual budgets along a range from 2 percent to 20 percent, Spears said, although those figures will become clearer as each agency continues to track expenses.

On March 22, the Centers for Medicaid and Medicare Services loosened its rules, inviting states to apply for relief through a variety of variances, including rate increases and up-front emergency or “retainer payments.” “Retainer payments” is a federal Medicaid term.

Spears, the CPNRI director, submitted the request for the $4.55 wage increase March 25 to the state’s acting Medicaid Director, Benjamin Shaffer. Spears represents about two thirds of the three dozen agencies operating in Rhode Island, but she said any wage increase should apply to all developmental disability service providers, and to families who hire their own staff for loved ones. Spears said Pennsylvania’s retainer payments have built-in rate increases up to 40 percent, while Connecticut hiked rates for group homes and other residential settings by 25 percent in its retainer payments. Day programs in Connecticut will get another 5 percent in the retainer payments.

Layoffs of day program staff in Rhode Island will put a big strain on the unemployment insurance of the agencies, most of which are self-insured, Spears said. While income from day programs has stopped, agencies still have the same fixed costs, as well as new ones, as their focus shifts to respond to the threat of infection in group homes and other residential settings.

Existing fixed costs include rent, leases on vehicles used in programs, insurance, utilities, professional services, software, leases on office equipment, telephone and communications costs, and other expenses, she said. Unanticipated costs include:

• Employees taking time off under the federal Family Medical Leave Act, because of a need for childcare and other family situations, requiring agencies to maintain health insurance for them.

• Steeper costs for providing direct care to clients, because higher-paid staffers are needed to augment the efforts of regular front-line workers. These other employees include supervisors, managers, clinicians and nurses. • Added costs for aggressive cleaning protocols, involving more time from outside specialty contractors and more work done by agency employees. Providers also have scoured the market for hand sanitizer, personal protective equipment, and other supplies.

At the state’s Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the outgoing Director of Developmental Disabilities, Kerri Zanchi, says she will stay on “for a little while longer” to support the coordination between operations and funding during the healthcare crisis. Kevin Savage, the new acting director, and Heather Mincey, who is in charge of division social workers, round out the division’s leadership.

Antosh Resolves Dispute Between RI and DOJ On Compliance With 2013 Sheltered Workshop Case

By Gina Macris

Federal court monitor A. Anthony Antosh has forged a resolution to a long-simmering dispute between the U.S. Department of Justice and the state of Rhode Island over the state’s compliance in connection with two civil rights decrees aimed at finding jobs for adults with developmental disabilities and otherwise integrating them in their communities.

The Chief Judge of the U.S. District Court in Rhode Island announced that both the state and the DOJ have agreed to a detailed compliance road map crafted by Antosh in an order made public March 3.

In a separate order Feb. 28, the Chief Judge, John J. McConnell, Jr., announced he has elevated Antosh from interim to permanent status as monitor.

The judge’s March 3 order incorporated recommendations Antosh had previously submitted detailing the parameters for the state’s “substantial compliance” with a 2013 Interim Settlement Agreement (ISA), a total of 88 adults with developmental disabilities.

Antosh focused on 32 individuals who are either unemployed or working in non-competitive employment for a private developmental disability service provider. He enumerated a variety of services and supports which must be provided to these particular people, including new trial work experiences, more non-work activities in the community and a variety of specialized help to break down barriers like mobility issues, vision problems and behavioral challenges which hinder some people from getting around and looking for work.

Antosh extended the monitoring period from the ISA from July to December. To achieve compliance with the ISA, the state must show that 80 percent of the people in Antosh’s case studies are spending more time in the community, either for work or leisure. The ISA was originally scheduled to end July 1.

Antosh also said the existing funding does not go far enough, nor does it have the flexibility to meet the individual needs and preferences of persons protected by ISA, and by implication, a broader 2014 consent decree with a statewide reach.

The ISA and the statewide decree of 2014 both draw their authority from the Integration Mandate of the Americans With Disabilities Act, reinforced by the Olmstead decision of the U.S. Supreme Court.

In addition to requiring funding for specific services, consultations and technology on a person-by-person level, Antosh called for a re-calculation of the state’s existing funding mechanism for reimbursing private providers working with adults facing intellectual challenges.

While such a review is well underway and is expected to wrap up in June, it appears that the earliest the General Assembly would be able to enact any significant changes to the existing funding model would be in 2021, when the statewide consent decree will be in the seventh year of a ten-year enforcement period.

Most, if not all, of the 88 persons protected by the ISA are former students of the Birch Academy at Mount Pleasant High School in Providence. Many of them were funneled from Birch to a now-defunct sheltered workshop called Training Through Placement in nearby North Providence.

In introducing his study of the unemployed ISA population, Antosh noted that most of the people he interviewed could not answer his questions about their interests, the jobs held by relatives or friends, or if there was any kind of work they would like to try.

The answers provided evidence that these individuals had had limited life experiences, “one of the most common characteristics associated with individuals who have an intellectual disability,” Antosh said.

He said that “people do not choose what they do not know about,” which means that the individualized, or “person-centered” process of planning for job searches and other activities is not meaningful unless the person has had a “sufficient number of experiences of sufficient duration.”

This rationale underscored a requirement that each of the currently-unemployed persons have one or two trial work experiences, depending on whether they had previously had any community-based jobs, and that the state find the money to add the supports for these activities.

Since last July, the state had maintained that, because it has policies, practices and resources in place to satisfy the requirements of the 2013 ISA, it had met the compliance standards of the agreement, even if some of the 88 individuals in the protected class didn’t actually have jobs in the community as required.

But Antosh disagreed. He said that because the ISA population is “so small and so focused, the question of substantial compliance is about whether each and every individual has received supported employment services” and other necessary assistance.

Antosh said his study could not find any evidence the state is complying with one overarching requirement in the ISA, that it provide services for a total of 40 hours a week, including work and non-work activities in the community. The same requirement carries through to the statewide consent decree of 2014.

The state had said, in effect, that its best efforts to find jobs for the ISA population satisfied the requirements of the interim agreement, even though 15 former Birch students had never been employed outside of a sheltered workshop. The state has pledged to continue working with these persons.

But Antosh analyzed the barriers to employment listed by the state in these cases and made recommendation for ways the state can mitigate them:

For example, the state should provide:

• Up-to-date communications technology for people who have difficulty expressing themselves verbally

• Consultations with physical or occupational therapists for people who could benefit from better wheelchairs or other strategies for positioning their bodies.

• Access to tablets and other technology for those who want to do job searches or just stay in touch with the activities occurring in their communities.

• Assistance to service providers to develop strategies for reinforcing positive behavior for those who struggle with behavioral challenges. He said he found no evidence that these strategies were being used with the people who need them.

• Opportunities for conversations between families of persons with developmental disabilities who have had experience with supported employment and those who are resistant to the idea. Antosh said those who are resistant have expressed a willingness to listen to other families.

As for the state’s role in job searches, Antosh prescribed an approach similar to the “Real Jobs” strategies used by the state Department of Labor and Training, which starts with a survey of the needs in the business community and then tries to match individual interests and aptitudes with those openings, offering training to prepare potential job applicants.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has indicated it is close to announcing the third iteration of a targeted supported employment program that will focus on some 200 adults with developmental disabilities who have never had regular jobs. It is not clear whether the plans for the newest version of the so-called Person-Centered Supported Employment Performance Program will correspond to Antosh’s approach, which is now required by the Court.

Antosh plans to track increases in jobs and community activities during reviews in May and November to determine if the required services are in place for each person and whether there is a positive change in their engagement with the community.

Assuming that the state achieves compliance in December, there would be another year’s probation, through the end of 2021.

Antosh does not expect everyone who is either unemployed or not competitively employed to have a job in short order. In his report, he estimated that 9 of the 32 people on his list can be employed in a year’s time and that another two can find jobs within two years.

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.

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 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 

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.