RI Faces Uphill Climb Halfway Through DD Consent Decree Implementation

Bar graph on employment targets 60-30-19.JPG

Bar graph from RI’s latest report to federal court monitor indicates RI is on track to meet one of three categories of employment targets in 2019. “Youth Exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

By Gina Macris

Halfway through Rhode Island’s decade-long agreement with the federal government to ensure that adults with developmental disabilities can work and enjoy leisure time in the larger community:

  • Rhode Island has linked 38 percent of its intellectually challenged residents to acceptable jobs, prompting a federal monitor to warn that it needs to step up its game

  • Service providers argue that continued progress will take a larger financial investment than the state is making

  • Success stories abound but some families remain skeptical about whether the changes will ever work for their relatives.

Five years and three months after Rhode Island signed a federal consent decree to help adults with developmental disabilities get regular jobs and lead regular lives in their communities, 857 people have found employment. Yet, 1,398 others are still waiting for the right job match or for the services they need to prepare for work.

The pace of adding individuals to the employed category has slowed dramatically. Only 37 individuals were matched with jobs during the first two quarters of the current year. To meet its overall employment target for 2019, the state will have to find suitable job placements for 199 more adults. That would require a pace in the second half of the year that is five times faster than the first half.

Though the federal consent decree was signed in 2014, meaningful efforts to comply with its terms did not get underway until two years later, when a federal judge threatened to hold Rhode Island in contempt and levy fines if it did not take numerous and precise steps to begin compliance in a systematic way. At that point, state officials were struggling even to come up with an accurate count of the number of individuals protected by the consent decree, so inadequate was its data collection.

The active census of the consent decree population has grown since 2016, when the judge ordered the state to improve its record-keeping and the monitor forced the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Rhode Island Department of Education (RIDE) to look again at special education students who might be eligible for adult services.

The most recent figures show that there are 3,764 intellectually challenged adults active either with BHDDH or RIDE who covered by the consent decree.

Of that total, 211 were employed in the community prior to the consent decree. Some have signaled they don’t want to work, either because they are of retirement age or for other reasons. Nearly 1,200 others are still in school and not yet seeking jobs.

Of the 2,255 adults who must be offered employment over the life of the consent decree, 38 percent have landed jobs.

The figures are re-calculated every three months.

state's employment chart as of 6-30-19.JPG

Employment data from the state’s report to the consent decree monitor as of June 30, 2019. broken down by categories of persons who must be offered jobs. “Youth exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

Rhode Island agreed to overhaul its services for the developmentally disabled population after an investigation by the U.S. Department of Justice found the state’s over-reliance on segregated sheltered workshops and day care centers violated the integration mandate of the Americans With Disabilities Act.

People with disabilities have the civil right to the supports and services they need to live as part of their communities to the extent that it is therapeutically appropriate, the U.S. Supreme Court said in the Olmstead decision of 1999, which upheld the integration mandate. In other words, integration should be the norm, not the exception.

Some people couldn’t wait to get out of sheltered workshops when the consent decree was signed and quickly found jobs in the community with a little bit of assistance. But some families with sons and daughters who have more complex needs saw sheltered workshops close without any transition plan. For some of them, the consent decree continues to represent a sense of loss.

At a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities (DDD), and Brian Gosselin, the state’s consent decree coordinator, had just finished applauding the successes of those who have found jobs or are on their way to shaping their careers, when Trudy Chartier spoke up on behalf of her daughter.

Trudy Chartier * all photos by Anne Peters

Trudy Chartier * all photos by Anne Peters

Her daughter is 55, deaf, has intellectual and behavioral problems and uses a wheelchair, Chartier said. She wants a job in the community and she’s been looking for five years.

Her daughter was in a sheltered workshop for a while, Chartier said, and “she loved it.”

“She didn’t care about making $2 an hour,” her mother said, and she made friends there. Now, she said her daughter “is not getting anywhere” and is “so dissatisfied.”

At the age of 80, Chartier said, she doesn’t have the energy she once had to help her daughter change things.

Later, Douglas Porch sounded a similar concern. “I can understand that the idea is to get them into the community, but what it’s actually done is destroyed my daughter’s community, because you’ve taken away her friends.”

“She’s in a group home, with nothing for her to do,” Porch said.

Zanchi, the DDD director, said that the consent decree certainly has changed the way people receive services. The intent is “not to isolate, but the opposite, to build communities,” she said.

“If that’s not working and it sounds like it’s not, we need to hear about that,” Zanchi said. “We can help you so that she can engage with her peers more effectively.”

Another parent, Greg Mroczek, also spoke up. “In terms of all the possible models, isn’t a sheltered workshop for a segment of the DD population the best possible model? Isn’t that what people are saying? It worked for my daughter as well,” he said, and nothing has replaced it.

Kerri Zanchi

Kerri Zanchi

He asked whether the sheltered workshop is “off the table” in “any way, shape or form” in Rhode Island.

Zanchi talked about the state’s Employment First policy, which values full integration and“investing in the skills and talent of every person we support.”

“We know that individuals of all abilities have had successful employment outcomes. We also know that employment is not necessarily what everybody wants,” Zanchi said.

“Striking that balance is a challenge,” she said. The state’s developmental disability service system and and its partners are working hard to help meet people’s needs, Zanchi said.

Rebecca Boss

Rebecca Boss

When Zanchi was hired at the start of 2017, she was the first professional in developmental disability services to run the Division of Developmental Disabilities in about a decade.

Zanchi and Rebecca Boss, the BHDDH director, have improved the bureaucratic infrastructure to foster employment, professional development, quality control, and communications with families and consumers and the private agencies the department relies on to deliver services that will meet the monitor’s standards.

For example, the developmental disabilities staff has been expanded and reorganized. An electronic data management system has been introduced. BHDDH invited providers and representatives of the community to the table to overhaul regulations governing the operations of the service providers and has maintained a quality assurance advisory council, with community representation.

Broadly speaking, the leadership of Boss and Zanchi has set the tone for a philosophical shift in which employment is part of a long-range campaign to open the door to self-determination for adults with developmental disabilities – in keeping with the mandates of the consent decree. The state’s last sheltered workshop closed in 2018.

The consent decree also has fostered a revival of advocacy in the community and the legislature, where there had been a vacuum once an older generation of leaders had passed on.

So why isn’t the glass half full at the halfway point in the decade-long life of the consent decree? In a word, money.

Advocates say a central issue is the lack of an investment in the ability of the system to reach more people with the array of services that will open doors and enable them to find their places in the community.

To satisfy the requirements of the consent decree, the state relies on the efforts of private agencies that provide the actual direct services.

The federal monitor in the consent decree case, Charles Moseley, has asked the state to get to the bottom of what he described as a lack of “capacity” on the part of these private agencies to take on new clients.

BHDDH is circling around the funding issue with an outside review of the fee-for-service rate structure governing developmental disability services. That analysis is designed to expand the analytical capabilities BHDDH, leaving the policy decisions to the department leadership.

Advocates for adults with developmental disabilities, most prominently state Senator Louis DiPalma, D-Middletown, say there must be a public discussion about how much money it will take in the long run to complete the transformation from sheltered workshops and day care centers into one that assists people in finding their way in life. DiPalma chairs a special legislative commission studying the current fee-for-service system.

In the meantime, DDD is soliciting a proposal for the third iteration of its performance-based supported employment program, which is designed to focus on people who have never held a job. This group includes young people completing high school and seeking adult services for the first time, as well as adults who face multiple challenges and would find it difficult to fill the standard job descriptions put out by employers.

The new Person-Centered Supported Employment Performance Program (PCSEPP 3.0) is expected to launch Jan.1 with an emphasis on “customized” employment, tailored to match an individual’s strengths and interests with the needs of an employer who is willing to carve up the work at hand in a non-traditional way.

The concept of customization is not new.

In Rhode Island, a few adults with developmental disabilities have had customized employment for many years, most often arranged with the support of their families, who hire staff and direct a unique array of services for them rather than relying on an agency.

In addition, the Rhode Island Council on Developmental Disabilities promotes self-employment, a form of customization, through a business incubator created with the help of the Real Pathways RI Project sponsored by the Governor’s Workforce Board.

The DD Council highlights the products and services of self-employed adults with developmental disabilities as part of its annual holiday shopping event, Small Business Saturday Shop RI, scheduled this year for Nov. 30 at the Crowne Plaza Hotel in Warwick.

The U.S. Department of Labor defines customized employment as a “flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized determination of the strengths, needs, and interests of the person with a disability, and is also designed to meet the specific needs of the employer.”

Since the supported employment program started in 2017, providers have expressed concerns that, because it is tied to the fee-for-service reimbursement system, it does pay for initial investments the agencies might have to make to participate.

Those concerns persisted during a meeting between DDD officials and potential applicants for the customized employment program in mid July. At the providers’ request, DDD has extended the application deadline to October 4.

Womazetta Jones

Womazetta Jones

The state’s new Secretary of Health and Human Services, Womazetta Jones, has promised to be a careful listener to the concerns of the developmental disability community.

Speaking at the recent public forum, after just eight days on the job, Jones acknowledged the state’s efforts to improve services for adults with developmental disabilities but also cautioned against complacency.

Even though the state has substantially increased funding for developmental disabilities in recent years and gained “stable and effective leadership” at BHDDH, “that doesn’t mean anyone in this room or state government is content with recent progress,” she said.

“The moment we think we don’t have more to do, is the moment we have lost our way,” Jones said, signaling that she is available for further discussion of issues affecting people with developmental disabilities.

RI DD Direct Care Raises To Kick In Oct. 1

By Gina Macris

Direct care workers employed by private agencies serving persons with developmental disabilities in Rhode Island will have to wait until October to receive raises provided in the state budget that took effect last month.

But when the raises do show up in their paychecks, they’ll be for the full amount – 80 to 85 cents an hour, according to state officials.

A spokesman for Nicholas A. Mattiello, speaker of the House of Representatives, had suggested that raises proposed by Governor Gina Raimondo in her budget plan, and enacted by the legislature, might take effect July 1.

An additional pay boost added in the waning days of the General Assembly session would follow on Oct. 1, the speaker’s aide had said.

But state officials now say that both raises will take effect Oct. 1, allowing time for the state to work with the federal government to make technical changes required in the Medicaid program to incorporate the wage increases.

Direct care workers employed by developmental disability service organizations will receive an estimated 80 to 85-cent hourly pay raise effective Oct. 1, according to state officials.

The General Assembly set aside a total of $9.5 million in federal and state Medicaid funds - including $4.5 million from the state budget- for raises to direct care workers. That total consists of $6.2 million proposed by Governor Gina Raimondo in her original budget plan and an additional $3.3 million added by the House in the waning days of the 2019 session of the General Assembly.

At that time, Mattiello’s spokesman said that the pay increase proposed by the Governor would become effective July 1 and the amount added by the House would kick in Oct. 1.

But the final budget language does not specify an effective date.

In a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities, said that because the pay raise involves federal Medicaid funds, the state must work with the Centers for Medicare and Medicaid Services to make changes to the federally-authorized reimbursement rate the state pays to privately-run service providers for front-line staff.

Unlike previous pay increases enacted by the legislature, the $9.5 million investment in direct care wages will not extend to supervisors, job coaches and other specialists working with adults with developmental disabilities, state officials have said.

Raising the pay of direct care workers is considered a critical issue in employers’ ability to recruit and retain staff at a time when the state relies on some three dozen privately-run agencies to implement the requirements of a 2014 federal civil rights consent decree. Drawing its authority from the 1999 Olmstead decision of the U.S. Supreme Court, the consent decree requires the state to change to an integrated, community-based model of daytime services by 2024, with an emphasis on employment.

According to a budget analysis by the House Fiscal Office, this year’s raises will boost the pay of direct care workers to about $13.00 an hour. But the state and private providers historically have differed on how far raises will go, because the state allows much less for employee benefits and other employment-related overhead than providers say those expenses actually cost.

A trade association of two thirds of private providers in the state says that on average, entry-level employee make about $11.44 an hour, while more experienced direct care workers make an average of about $12.50 an hour. The Connecticut legislature enacted a minimum wage of $14.75 for developmental disability and personal care workers in 2018. Massachusetts pays $15 an hour for personal care workers, a category which includes many who support adults with developmental disabilities.

RI House Gives Extra Bump To Pay Of Front Line DD Workers As Budget Deliberations Near End

By Gina Macris

The Rhode Island House has added a total of $9.6 million in federal-state Medicaid funding to boost the pay of direct care workers for adults with developmental disabilities in the state budget for the fiscal year beginning July 1.

The increase, awaiting approval by the Senate, represents the largest single-year investment in wages since drastic cuts were made in 2011. In 2016, the legislature earmarked $5 million for a rate hike, and the next year it added $6.1 million.

But the rates for Rhode Island’s direct care workers still lag behind those of neighboring Connecticut and Massachusetts.

This year’s wage hike is was part of an overall $296.9 million allocation for developmental disabilities, which includes $13 million in federal Medicaid reimbursement to create a third-party case management initiative called a Health Home.

In an unusual Saturday session June 22, the House also addressed a shortfall in the current developmental disabilities budget, adding $2.9 million in supplemental funding.

Developmental disability services encompass both the private system serving about 4,000 clients and a state-operated network of group homes for about 125 individuals, accounting for more than half the spending in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). The House-authorized spending cap for BHDDH in the next budget is $463.2 million.

A spokesman for House Speaker Nicholas A. Mattiello explained a floor amendment that raised the total earmarked for a wage increase in Governor Gina Raimondo’s budget from $6.4 million to $9.6 million.

Larry Berman said the governor’s $6.4 million, including $3 million in state funding and $3.4 million in federal reimbursements, will mean a 41-cent raise to the hourly rate for direct support workers on July 1. The hourly rate, which he put at an average of $12.27, would rise to $12.68, Berman said.

The additional $3.2 million in the floor amendment, including $1.5 in state revenue, will be applied Oct. 1, triggering an additional wage hike of 41 cents an hour, for a total hourly rate of $13.09 during the last nine months of the fiscal year, Berman said.

In the past, increases for direct care workers have meant that supervisors and other support personnel have also received raises. But Berman confirmed that this year, the allocation earmarked for pay bumps apply only to front-line caregivers. In all, about 4,000 work in the private sector in the field of developmental disability services.

Berman’s figures refer to the basic hourly wage rate in the BHDDH reimbursement model for private providers, but that doesn’t mean each direct care worker will get the increase he cited.

Many variables exist in the way each of the providers figures out how much to pay workers and how much to set aside for benefits and other employer-related expenses. All that means that the amount of the actual wage hikes will vary.

In the past, the state and the private providers have differed on how far a rate hike will go.

In a statement, Mattiello took credit for redirecting additional funds to direct care workers.

“When about $1 million was identified as available in the budget, I suggested it go to those workers who are providing outstanding care to the developmentally disabled community. They deserve this rate increase.”

The Community Provider Network of Rhode Island, (CPNRI) a trade association of about two dozen providers, posted its thanks on Facebook:

“CPNRI is pleased to see the commitment of the Speaker, Senate President and Governor and all the Representatives and Senators who have supported increased wages for DD workers in Rhode Island in the 2020 budget. This investment not only will raise wages for this invaluable workforce, it supports individuals with intellectual and developmental disabilities to lead meaningful lives in our communities. Thank you to all who have prioritized this workforce.”

The wage increase is assured passage in the Senate, where developmental disability services have the support of the leadership, including Senate President Dominick J. Ruggerio, William J. Conley, Jr., Chairman of the Senate Finance Committee; and Sen. LouisA. DiPalma, first vice-chairman of the Senate Finance Committee.

The extra push in funding occurred just as Mattiello sought to tamp down a controversy involving a Cranston chiropractor, who was to receive a $1 million authorization to bill the state for services for an unproven neurological treatment for traumatic head injury and other disorders that failed to qualify for federal Medicaid reimbursement..

On June 20, Mattiello announced he would pull the $1 million in funding from Victor Pedro, because the issue had become too controversial and he wanted to avoid a lengthy floor battle, even though he still supported the chiropractor.

Berman said most of the last-minute $1.5 million-increase in worker wages came from the allocation that Mattiello pulled from the chiropractor, along with funds from various other accounts.

Spending for already-established developmental disability programs and services from all revenue sources in the next fiscal year would be capped at $284 million – about $12.3 million more than originally approved for the current fiscal year. Most of that figure comes from the federal-state Medicaid program.

Meanwhile, the House approved a revised developmental disabilities budget of slightly over $274.6 million for the current fiscal year, which is $2.9 million more than the $271.7 million the General Assembly enacted a year ago.

The revised figure includes about $1.7 million in state revenue that represents an adjustment for an audit finding that the state was incorrectly leveraging federal Medicaid money to pay for fire code upgrades in group homes and other facilities serving adults with developmental disabilities, Berman said. Capital projects are now all assigned to the Department of Administration, he said.

Without supplemental funding and savings in other BHDDH accounts, the cost of services in the privately-run developmental disability system would have exceeded the amount the General Assembly originally allocated by about $3.8 million in General revenue.

A third-quarter spending report prepared by BHDDH said that the total state share of Medicaid-funded direct services in the private system is projected at about $111.4 million by June 30. The enacted budget for the current fiscal year allows $107.6 million in that category, but the supplemental funding recommended by the Governor and approved by the House reduces the projected shortfall in state funds to about $152,000, when combined with savings in other accounts.

In the third-quarter spending report for the current fiscal year, BHDDH officials project about a 1.5 percent increase in overall caseload growth and a $1.5 million increase in supplemental funding to clients who successfully appeal the individual amounts allocated for their services.

Counting all the Governor’s proposed supplemental funding for BHDDH in all three divisions, as well as savings in some budget line items, the department projected a year-end surplus of about $438,000 as of March 31.

RI Budget Controversy Touching House Speaker Yields Extra Money For DD Worker Raises

By Gina Macris

Bowing to intense political pressure, Rhode Island House Speaker Nicholas A. Mattiello said June 20 that he will pull a $1-million budget line item for an unproven neurological service that doesn’t qualify for Medicaid funding and reallocate most of the money to raises for those who care for adults with developmental disabilities.

The budget, passed by the House Finance Committee June 13, now contains $3 million in state funding and $3.4 million in federal Medicaid funding – a total of $6.4 million – to raise the pay of direct care workers, who earn significantly less than those doing the same job in Massachusetts and Connecticut.

On the Tara Granahan morning show on WPRO radio, Mattiello said he continues to support chiropractor Victor Pedro of Cranston, who practices what he calls Cortical Integrative Therapy (CIT). The Speaker said he is removing the $1 million from the proposed budget “only because it’s politically controversial.”

“Do I think that’s the right thing to do? I’m not convinced of that, but we’re going to pull it because the issue has become very controversial,” Mattiello told Granahan.

Mattiello’s spokesman, Larry Berman, said later in the day that most of the $1 million allocation for CIT will be added to the raises for direct care workers because “Speaker Mattiello believes these are some of the hardest-working and dedicated employees in the state.”

The General Assembly’s leading champion of adults with developmental disabilities, Sen. Louis DiPalma, D-Middletown, tweeted his appreciation for Mattiello’s decision to re-direct the funds to the wage raises. “THANK YOU VERY MUCH!!!!! It is needed, most welcomed and greatly appreciated!!!!!”

Even if all $1 million were added to a line item set aside in the budget for the raises, the total would still be far below the $28.5 million advocates have sought in state funding to stabilize the workforce, plagued by high turnover and a high job vacancy rate.

Berman could not say exactly how much will go to the raises. The breakdown will be available when the full House convenes June 21 to consider the state’s $9.9 billion- budget for the fiscal year which begins July 1, he said.

Any addition of state funds to worker pay will generate about 52 cents on the dollar in federal Medicaid reimbursement, in effect doubling the amount available.

Without the extra allocation, the proposed budget’s $6.4 million for wage hikes would add an average of 34 to 44 cents an hour to the pay of about 4000 direct care workers. Private providers and state government differ on their estimates of how far the money will go.

Entry-level direct care workers make an average of $11.44 an hour, according to a trade association of service providers, while more experienced colleagues are paid an average of $12.50 an hour. The Connecticut legislature enacted a minimum wage of $14.75 for personal care workers in 2018, and Massachusetts pays about $15 an hour.

On the morning talk show, Mattiello defended the chiropractor, who has donated to several political campaigns, including his own, even while he explained why he is pulling the money.

“I’m going to have a terrible debate on the (House) floor. So politics is what it is, and I’m going to do something that I should not do,” Mattiello said.

“I will continue to support the doctor because I think he brings a unique and special treatment to a lot of kids and folks who have no place else to go.”

While Mattiello said Pedro has had “great success,” the federal Medicaid program has turned down the state’s request for federal reimbursement for the treatments because of a lack of scientific evidence that they are effective.

Mattiello said he met Pedro in connection with his law practice before he was elected to the General Assembly and was impressed by the testimonials of his patients.

One of Pedro’s patients was the late father of former Rep. Frank Montanaro, Jr., Mattiello said in the radio interview. Montanaro now works as executive director of the financial and administrative office of the General Assembly.

The first budget allocation for CIT dates back more than a decade. Since Governor Gina Raimondo took office in 2015, her administration has tried to cut the CIT allocation out of the budget, without success.

Mattiello’s latest attempt to restore funding for Pedro that had been cut by the Raimondo administration caught the eye of blogger Steve Ahlquist of Uprise RI. His investigative article sparked the outrage of the state Republican Party and numerous other critics of the Speaker.

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

RI “Not Far” From Institutional System Of DD Services, Antosh Tells Legislative Commission

A. Anthony Antosh

A. Anthony Antosh

By Gina Macris

Other than moving people out of institutional living with the closing of the Ladd School in 1994, Rhode Island hasn’t made life appreciably better for adults with developmental disabilities, according to state’s most prominent academic in the field.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said that every week he gets calls from parents who say how “complicated it has gotten” to deal with state-funded services and “how unstable the system is.”

“Our system is not institutional, but it’s not far from that,” Antosh said. He has been active as an educator and researcher in the field of developmental disabilities since the 1970s and was a plaintiff in a lawsuit that ultimately closed the Ladd School.

If the state transfers control of its services – even partially -- to the people who are served, “you begin to change what the system looks like,” he said. Individuals will become “more responsible for themselves.”

Antosh made the comments May 22 as a member of the Project Sustainability Commission, a special legislative commission studying the current state of developmental disability services. Antosh and other commissioners outlined their reform suggestions at the session.

He zeroed in on a requirement now in place that sets out ratios for staffing according to the degree to which a person is perceived to be disabled – a “naive notion” in his view. The ratios allow one-to-one or small group staffing only for the most challenged individuals and were designed for day care facilities or sheltered workshops.

The funding rule remains in place even though the state in April entered the sixth year of a ten-year agreement with the U.S. Department of Justice requiring it to change to an integrated, community-based system of care. The last sheltered workshop in Rhode Island closed last year.

Antosh said an alternative structure could be a community support team responsible for a certain number of people. The team would figure out how to arrange its time to meet the individual needs of its clients in the community.

DD Council Weighs In

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, also said that he wanted a system “driven by the person and the family.”

There is much talk about “person-centered planning,” he said, but “sometimes, the person is at the center and the other people are doing the planning.”

Nerney recommended that the person receiving services and the family take the lead in drawing up a plan for life in the community. They would be guided by an independent facilitator, not by someone who works for the state funding agency or a private service provider.

The individual and the family would have control over the budget assigned to them and would be able to hire whom they choose to provide paid supports.

Until recently, Nerney said, individuals and families who direct their own services were allowed to use the money allotted to them only to pay for support workers.

Those who choose to receive services from an agency should at least know how much money goes into each category of support, Nerney said.

Antosh, meanwhile, said that funding should be organized by function so that individuals and families have a clearer idea of its purpose.

The notion that plan-making and case management should be separated from the funding agency and the service provider is already embedded in federal Medicaid rules under the title of “conflict free case management.”

“Health Home” Merits Debated

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) wants to set up a Medicaid-funded “Health Home” as an independent planning and case management entity for persons with developmental disabilities.

But some commission members have wondered aloud whether a Health Home would be just another layer of bureaucracy.

And Nerney said most people don’t even like the term “conflict-free case management.”

Antosh agreed that “conflict-free case management” should be made simple. The state should have a list of trained independent facilitators, or “navigators,” as he referred to them, to help individuals and families develop plans and mediate any differences among those contributing to an individual plan.

Individuals and families should have a choice of managing their own services, signing up with an agency, or designing a customized combination of self-directed supports and agency-managed services, he said.

Tom Kane, Left, With Antosh

Tom Kane, Left, With Antosh

Tom Kane, who represented a service provider’s perspective, agreed that the people should be in control, with the services following their needs.

To lay the groundwork for real choice, the system should help adults with developmental disabilities “discover their options,” and providers should follow their lead in delivering services, said Kane, CEO of AccessPoint RI.

Kane recommended a concerted statewide marketing campaign aimed at employers that promotes adults with developmental disabilities as an enthusiastic and reliable workforce.

Several other recommendations from Kane echoed recurring issues among members of the commission including:

  • A need for funding that reflects the real costs of services, as well as salaries that will attract and retain talented employees. Recommendations that arise from the review of the funding model and rates that is now underway should be presented to the General Assembly “without edit,” Kane said, and should be used as the basis of funding a new system. He noted that the last review came up with recommendations which the legislature never used.

  • Concerns about a lack of housing options

  • A need for consumers’ access to technology to help them achieve the greatest independence possible.

A Call For A More Stable Funding Cycle

All the commission members, except Antosh, favor annualized budgets for individuals. Antosh said arrangements should be made in two-year increments for funding and services. He also said that there should be a single streamlined application process, no matter the source of the funding, which may come from BHDDH, the Office of Rehabilitative Services, or the Department of Labor and Training.

Families of youngsters deemed eligible for adult services while they are still in high school should also get a budget for exploratory activities, because they don’t know what choices are possible until they experience various options, he said.

The state now determines funding levels annually on paper but reserves the right to change the amount actually released for spending every three months – on a quarterly basis. Families and providers agree that the quarterly allocation - the only one like it in the nation – is a major impediment to the systematic planning necessary for a stable system of supports.

Kane provided some history on the quarterly allocations:

In 2010, he said, payments to private service providers ran over budget and the state told them their reimbursements would be cut for two months – one month retroactively – to make up the difference.

Some providers sued, Kane said, arguing that the state was still obliged to fulfill its contract with them. The providers won, but the next year, in 2011, BHDDH introduced quarterly allocations along with Project Sustainability, the fee-for-service system that significantly reduced reimbursements and is at the center of the commission’s deliberations.

Mental Health Services Lag

The issue of mental health received considerable attention, with Nerney recommending that the system develop and implement a variety of strategies to prevent crises or resolve them once they occur.

Nerney supported the idea of a mobile crisis unit that he said was suggested by Gloria Quinn, Executive Director of West Bay Residential Services, at the previous commission meeting May 6.

Quinn recommended convening a group to explore successful practices in supporting those with complex mental health and behavioral needs in the community, minimizing the need for excessive psychiatric hospitalization.

Rebecca Boss, the BHDDH executive director, and Kerri Zanchi, the Director of the Division of Developmental Disabilities, both indicated they are aware of a need for greater support and intervention in the area of behavioral health for persons with developmental disabilities.

“We don’t have a good handle on the needs of families in crisis,” Zanchi said.

The assessment tool that BHDDH uses to determine funding levels, the Supports Intensity Scale (SIS), garnered a new round of criticism, despite efforts in 2016 to reframe the questions it asks to better identify support needs and the re-training of all the social workers who conduct the highly scripted interviews..

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

Critic Says Assessment Method Is “Demeaning”

Peter Quattromani, executive director of United Cerebral Palsy RI and spokesman for the Providers Council, said the state should return to using the Personal Capacity Inventory to identify funding needs because it reflects a more collaborative approach than the SIS.

Quattromani said he sat in on several SIS interviews and found the SIS to be a “very demeaning experience” with “very intrusive questions.” In some cases the interview varied, depending on who was asking the questions, he said.

Antosh said when parents experience the SIS for the first time, “they are absolutely horrified by it.”

He suggested that when the SIS was first piloted, it was not intrusive. It was “a conversation”, albeit a lengthy one, lasting for or five hours, Antosh said. Afterward the responses were correlated with funding needs.

Antosh said the SIS was designed to help professionals develop support plans, not as a funding tool, even though Rhode Island and other states use it that way.

Antosh said he would recommend that Rhode Island design its own assessment tool, not necessarily eliminating the SIS but using multiple factors to determine funding, including an exploration of behavioral health issues and other areas not covered in the SIS.

Heather Mincey, assistant director of the Division of Developmental Disabilities, said not all the comments abut the SIS process she has received from families have been negative, with some parents saying it “wasn’t all that bad.”

The May 22 meeting concluded individual members’ presentations on recommendations for change, which will be reviewed and consolidated along common themes and incorporated into a plan for moving forward, said the Commission chairman, Sen. Louis DiPalma, D-Middletown.

He said he anticipated a five-year process for implementation, with the aim of making Rhode Island achieve top national ranking among state systems of developmental disability services.

In the meantime, DiPalma said that he next commission meeting, on June 18, will feature remarks by the state Director of Labor and Training, Scott R. Jensen; and the CEO of the Rhode Island Public Transit Authority, Scott Avedesian Employment and transportation are two topics that have sparked a lot of complaints, DiPalma said. He said he expects the commission to continue meeting into July.

RI DD System Needs Stable Funding For Quality Services and Productive Lives - Commission

By Gina Macris

A successful model for funding Rhode Island’s developmental disability services would be more complex than simply increasing workers’ wages, members of a special legislative commission agreed at a meeting May 6.

Kelly Donovan, a commission member who herself receives services, said the work of the support person is “not a job; it’s a commitment.“

In a high-quality system of services, Donovan said, direct support professionals and the people they serve have a relationship. They develop strong bonds.

The discussion nevertheless returned repeatedly to the lack of funding that permeates the system, with rules that commission members say make it rigid and unresponsive to those needing services.

Peter Quattromani, CEO of United Cerebral Palsy of Rhode Island, said agencies that ask their employees to “ commit” to the persons they serve also require them to commit themselves to “a life of poverty” because employers, dependent on state funding, can’t pay salaries commensurate with professional work.

As a result, Quattromani said, the agencies are hiring “very temporary employees.”

“We don’t appreciate what it takes on the part of the individual to turn their life over to a staff person,” Quattromani said. Every time there’s turnover, there’s a new intrusion in that person’s life, he said.

The CEO of West Bay Residential Services, Gloria Quinn, said “I can think of examples when people go along with people and don’t know them. It gets complicated to do the right thing at the right time.”

But West Bay Residential has an annual staff turnover rate of 34 percent and a job vacancy rate of 15 percent, said Quinn, who recommended a system that is adequately funding, “including appropriate compensation for a well-trained workforce.”

At the same time, she said, there are employees who are doing an “incredibly important and skillful job” even without the compensation they deserve.

Sen. Louis DiPalma, D-Middletown, the commission chairman, said there is a great disparity in pay in two parallel systems of services.

“We do value the profession” of supporting adults with developmental disabilities, he said, as long as it is the state-operated network of group homes and facilities called RICLAS, short for Rhode Island Community Living and Supports. But private providers, who perform the same direct support work, are not valued, DiPalma said, referring to the state’s chronic underfunding of these agencies.

He said he never saw the situation quite that way until Tom Kane, CEO of AccessPoint RI, framed it in those terms during a recent budget hearing before the Senate Finance Committee.

RICLAS workers start at about $18 an hour, while entry-level workers in the private system average about $11.40 an hour. On an annual basis, the starting salary at RICLAS is $37,291, according to a spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). As state employees, RICLAS workers also get a full package of benefits.

DiPalma said that when the current fee-for-service reimbursement model was enacted by the General Assembly in 2011, the “right questions weren’t asked. We can’t let that happen again.”

He said he firmly believes that today, all legislators would say they value the work done in supporting adults with developmental disabilities, but “the critical thing is ‘how do we get there’? “ He alluded to a reimbursement model in which wages reflect the value of the work.

In Kelly Donovan’s vision of the future, adults with developmental disabilities will receive training and support in making their own decisions in an informed manner. And support persons will respect those decisions, she said.

Kate Sherlock, a commission member and lawyer with the Rhode Island Disability Law Center, concurred.

For a long time, the role of the staff person has been to “speak up for people,” she said. Instead, staff should facilitate decisions made by clients.

But clients “do not have the real opportunity to decide what they want, because there are not enough options,” Sherlock said. Decisions should not be “either-or,” she said. “It shouldn’t be ‘do you want chocolate or vanilla ice cream.’ “

“People want to live with people they choose. They want a job they like and they want to make a decent amount of money,” Sherlock said.

Enabling clients to make meaningful decisions about belonging to their communities and engaging in activities they want, as well as giving them the opportunity to eat healthy foods and be active and fit will at the same time elevate the staff role into a position that can have greater impact and be more desirable – even fun, Sherlock said.

The Disability Law Center supports a bill that would give legal standing to adults who support those who need assistance in decision-making, Sherlock said, but the measure is encountering difficulties in the Senate. DiPalma said he would look into it.

Commission members agree that Rhode Island needs to abandon its fee-for-service reimbursement system in favor of one that gives clients an annual budget with flexibility to spend it on what they want and need to enable them to live regular lives in their communities, in accordance with a 2014 consent decree and federal Medicaid rules reinforcing the Integration mandate of the Americans With Disabilities Act (ADA).

Not only is the current system under-funded but it is saddled by rules that make it too restrictive, they say.

Among the needs discussed May 6 are funding for:

  • training and career paths for staffers

  • Technology, such as smart phones and other devices and software, that can help clients become more independent from staff.

  • ·Easier access to transportation, which might include Uber and Lyft options to lessen clients’ dependence on staff time, which can be better used providing other types of supports

  • Better access to affordable housing

  • More intensive community-based mental health services that can prevent psychiatric hospitalizations.

In addition, the developmental disabilities caseload must be counted in a way that better informs budget makers, according to Quinn, the CEO of West Bay Residential Services.

All the recommendations which members have presented through May 6 can be found here .

The next meeting will be May 22, when commission members are expected to continue presenting their recommendations.

RI BHDDH Wants Consultants' Comprehensive ‘Best Strategies’ For Integrated DD System

By Gina Macris

The most recent meeting of Rhode Island’s “Project Sustainability” commission Aoril 25 left members surprised by news that an outside review of Rhode Island’s rates and reimbursement methods for private providers of developmental disability services will not conclude with consultants making dollars-and-cents recommendations for a new scale of payments.

In a follow-up question, Developmental Disability News asked officials of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to elaborate on the reasons for the approach it has taken in commissioning the outside review, which is intended to help the state meet the requirements of a 2014 federal civil rights decree..

In a statement, a spokesman said the department is looking for the “best strategies” for developing and paying for an “integrated and individualized system of services” - characteristics which would comply with the consent decree.

That decree draws on the authority of the U.S. Supreme Court’s Olmstead decision, which reinforced the integration mandate of the Americans With Disabilities Act.

The existing reimbursement system for private agencies led to over-reliance on facility-based care and sheltered workshop employment, in violation of the integration mandate, according to findings of the U.S. Department of Justice, which laid the groundwork for the consent decree. The fee-for-service reimbursement system, called Project Sustainability, resulted to significant pay cuts for direct care workers, high turnover and a high rate of job vacancy.

“Determining how to stabilize the workforce and what to pay direct care workers is a broad question that touches on many moving parts,” said Randal Edgar, the BHDDH spokesman.

The salary of workers, called “direct support professionals,” is an important part of the rate structure, but there are other costs which are “vital to a provider’s enhanced functioning,” Edgar said. He listed these costs:

  • employee benefits

  • training

  • supervision

  • management capacity

  • information technology

  • connection and liaison with community

“Asking the consultants to determine just one of the vital elements would not meet the overall financial needs of the Rhode Island Developmental Disabilities system. We are looking for the consultant to identify best strategies for providing an integrated and individualized system of services and help us develop best strategies to pay for that system. But we do not think it is the consultant’s job to say what direct care workers should be paid,” Edgar said.

Anyone who has questions about the rate review may submit them to BHDDH.AskDD@bhddh.ri.gov, Edgar said. (Please copy and paste the email address.)

Meanwhile, the special legislative commission studying Project Sustainability will meet Monday at 2 p.m. in the Senate Lounge of the State House, according to its chairman, Sen. Louis DiPalma, D-Middletown.

DiPalma said the session will focus on members’ recommendations for changes to better enable adults with developmental disabilities to live the lives they want with the supports they need.

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.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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.

Advocates: RI Must Put Higher Value On DD Workforce To Ensure Stability In Client Services

Image courtesy of RI Capitol TV

Image courtesy of RI Capitol TV

By Gina Macris

The incremental pay increase that Rhode Island Governor Gina Raimondo proposes for those who care for adults with developmental disabilities- about 34 to 41 cents an hour - is “much appreciated,” Tom Kane, CEO of AccessPoint RI, told the House Finance Committee recently.

But “it’s not enough,” Kane added quickly.

Entry-level workers making an average of $11.44 an hour, or more experienced colleagues paid an average of $12.50 an hour, are “often helping a person eat, shower, use the bathroom, or they could be helping someone learn how to drive their car,” Kane said.

“It is a completely and utterly important job, but based on the funding available, it is not really valued by our state,” Kane continued.

“ I’ve said this in this room a number of times. A budget is a statement of values, and what we’re saying is that this work isn’t worth enough money to make a living.”

To illustrate his point, Kane told Finance Committee members that he searched for jobs on the website Indeed.com to prepare for his testimony March 13 and found a posting from a kennel seeking someone to clean cages for $14 an hour.

“Not that I would disparage any job that anyone would have,” Kane said. “I think there should be dignity in all work. I think as a society we have to say, for those who care and support the people to live in the community, to try to have the best life possible, we need to fund the agencies to pay a reasonable rate.”

Kane spoke from the perspective of some three dozen private service providers in Rhode Island, the core of the state’s developmental disability service system. These agencies are trying to make ends meet while dealing with high job turnover and high vacancy rates, as well as the costly overtime it requires to ensure the safety of the vulnerable people in their care.

In the context of the state’s fee-for-service Medicaid reimbursement system, now in its eighth year, the concerns of the providers converge with those of a 2014 federal consent decree which spells out the civil rights of people who, through an accident of birth, spend a lifetime trying each day to rise to the challenge of diverse disabilities.

And in the past year, there has been growing pressure for change, both from those overseeing the implementation of the consent decree and from an expanding chorus of advocates.

In a “Week of Action” planned by the Community Provider Network of Rhode Island (CPNRI) March 26 through 28, providers and their supporters, including consumers and their families, will fan out under the State House rotunda to buttonhole individual legislators in the hours before the bell sounds shrilly at 4 p.m. calling the House and Senate to order.

In the fiscal year beginning July 1, Raimondo has proposed a $6.4 million budget increase targeted for pay raises, including $3 million in state revenue and $3.4 million in federal Medicaid funds. This sum would raise the wages of direct support workers by what state officials estimate as 43 cents an hour.

But the leaders of CPNRI and the Provider Council, another trade association, say that to stabilize the private system of developmental disability services, providers need about $28.5 million in state revenue, which would generate a roughly equal amount in federal Medicaid payments.

“We recognize that this is a substantial amount of money, but it is a result of chronic underfunding,” said Donna Martin and Peter Quattromani in a letter to Raimondo dated Jan. 9. Until March, Martin was executive director of CPNRI. Quattromani, executive director of United Cerebral Palsy of Rhode Island, represented the Provider Council.

Their reference to “chronic underfunding” alludes to “Project Sustainability,” the fee-for service funding model enacted by the General Assembly in 2011 with a $26-million budget cut. Project Sustainability was cited by the U.S. Department of Justice in 2014 as contributing to a segregated system of services that violated the integration mandate of the Americans With Disabilities Act.

With the closing of the Ladd School in 1994, Rhode Island was once first in the nation in de-institutionalizing adults with developmental disabilities and its efforts to include former residents in everyday life in the community. Today, 25 years after the Ladd School was shuttered, Rhode Island is ranked 32nd among the states in its inclusion efforts by CPNRI’s national affiliate, the American Network of Community Options and Resources.

Project Sustainability is currently the subject of two separate reviews, one by a special legislative commission and another by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which has hired a consultant to scrutinize both the reimbursement rates and the fee-for-service model itself.

Between 2011 and 2012, Project Sustainability exacerbated a downward trend in funding for developmental disabilities that eventually leveled off but has not caught up with the pace of inflation, despite budget increases in recent years, according to a ten-year analysis done by CPNRI. The study used state budget figures and consumer price index information kept by the state Department of Labor and Training.

Chart Courtesy of CPNRI

Chart Courtesy of CPNRI

Low wages have put Rhode Island service providers at a disadvantage in trying to recruit a variety of personal care workers like those who work with adults with developmental disabilities, experts say.

CPNRI reports that about one in three workers leave a developmental disability job every year, mostly, they say, because they can’t pay their bills. One in five positions remain vacant, driving up the cost of overtime necessary to ensure the safety of the vulnerable people in care, according to the trade association.

PHI National, long-term care consultants, have produced a chart comparing the earnings of personal care workers in Rhode Island, Connecticut and Massachusetts that shows Rhode Island with the lowest wages and the least buying power relative to the minimum wage.

chart courtesty of PHI and CPNRI

chart courtesty of PHI and CPNRI

Policy experts say that basic demographic data for the nation indicates a shortage of personal care workers in the next few decades. That was one of the key messages delivered by Mary Lee Faye, executive director of the National Association of State Directors of Developmental Disabilities Services, to the Project Sustainability study commission in January.

Meanwhile, the House Fiscal Office estimates that the governor’s proposed raise for front-line developmental disability workers would add add 41 cents to their average hourly wage, lifting it from $12.27 an hour to $12.68 an hour. The overall $6.4 million pay hike doesn’t include raises for supervisors or job development and support coordinators, the House Fiscal Advisor, Sharon Reynolds Ferland, has told the House Finance Committee.

Providers say the state’s estimates don’t match up with actual costs. The state funds 35 percent of overhead related to employment, including mandatory costs like health and dental insurance, workers compensation insurance, payroll taxes, paid time off and other items, according to a CPNRI policy paper.

In reality, providers say, these employee-related expenses cost 64 percent[1] of wages – a point CPNRI’s Martin and the Provider Council’s Quattromani made in their Jan. 9 letter to Raimondo.

Providers fill the gap between the available state and federal Medicaid funding and the actual costs of employee-related overhead by reducing the amount of the wage increase passed along to workers. Kane, in his testimony, said that for the lowest-paid direct care workers, Raimondo’s planned pay increase will not even cover the cost of a separate proposal she has made to increase the state’s minimum wage for all workers from $10.50 to $11.10.

In the last few years, individuals with developmental disabilities, their families, and providers have gained legislative advocates, most prominently Sen. Louis DiPalma, D-Middletown, who is the first vice-president of the Senate Finance Committee.

DiPalma, as chairman of the special legislative commission studying Project Sustainability, convinced a consultant involved in developing that fee-for-service model to return to Rhode Island and testify about his work last November.

Mark Podrazik, a principal in the Arizona-based Burns & Associates, made it clear that Project Sustainability was shaped in a frantic effort to control costs.

Mark Podrazik * Photo By Anne Peters

Mark Podrazik * Photo By Anne Peters

The firm ultimately was paid a total of $1.4 million to develop Project Sustainability and monitor how it affected spending for developmental disabilities services. (The funding model contains no provisions for measuring the impact of services on individuals.)

Podrazik testified that some of Burn’s key recommendations were ignored, including a proposed base pay of $13.97 an hour for direct care workers that would increase within a year or two to $15 an hour. That was in 2011.

Today, eight years later, advocates are still chasing that $15-hour wage. About a month ago, DiPalma and Rep. Evan Shanley, D-Warwick, introduced companion bills to raise direct care workers’ pay to $15 an hour by July 1, 2020. The chairman of the Senate Finance Committee, William D. Conley, was among the co-sponsors of DiPalma’s bill.

More recently, DiPalma introduced a second bill that would require all private human service agencies under contract with the state to pay their employees at least 44 percent above the minimum wage at any given time. Both Conley and Senate President Dominick Ruggerio have signed on to this bill as co-sponsors.

A year ago at this time, Raimondo had proposed an $18.4 million cut in developmental disability services for reasons that were never spelled out in public. Raimondo rejected warnings of(BHDDH) that the move would result in waiting lists for services or cuts in programming.

The proposed cut appeared to be unacceptable to an independent court monitor who continues to oversee implementation of the 2014 consent decree. The agreement calls for integrated, community-based services that are inherently more costly than the facility-based system embedded in Project Sustainability.

In May, 2018, the monitor, Charles Moseley, obtained written assurances from Raimondo that she would continue to support the work of the consent decree, which in the moment meant restoring the almost all the $18-million cut.

In the courtroom, the judge who periodically oversees the status of the consent decree, John j. McConnell, Jr. of U.S. District Court, has indicated his willingness to issue orders to ensure that specific goals of the consent decree are met. At the same time, he said he couldn’t order the state to spend a certain amount to achieve them.

Meanwhile, Moseley has continued to keep abreast of budget developments. In February he wrote McConnell, saying Raimondo’s proposed budget “appears adequate” to cover a deficit in the current fiscal year and fund the consent decree in the budget beginning July 1.

Without mentioning how the Governor may have calculated developmental disability budgets in the past, Moseley made a point of saying he has received assurances that the latest figures are based on real-time data about the projected use of developmental disability services.

The state’s lawyer, Marc DeSisto, has assured him that “the Governor’s recommended budget accepts the most up-to-date projections for financing the current costs of the system to ensure no changes for individuals with DD and continued commitment to achieving Consent Decree outcomes,” Moseley wrote the judge.

Moseley put the current working budget for the private system of developmental disability services at about $229.4 million. Raimondo’s proposal adds about $4 million to finish the current fiscal year, for a total of $233.4 million. Moseley said the increase includes:

· $1 million for the estimated growth in the number of people receiving services

· $1.3 million for increased costs of providing services

· $645,000 to compensate for unrealized savings in moving group home residents into less costly residential options

· $500,000 in other priorities.

In the fiscal year beginning July 1, Moseley said, Raimondo would add about $7.3 million to the private developmental disability system, for a total of $240.2 million. That figure includes:

  • $516,000 for continued growth in the number of people receiving services

  • $2.7 million for increased costs in providing services.

  • $6.4 million for the wage increase to direct care staff.

Those totals are offset by about $1.3 million in increased expectations for savings in residential costs and another million in savings from a reform initiative that didn’t start on time.

Moseley said all his figures were rounded off.

Deep in the background, BHDDH is quietly gearing up for a top-to-bottom analysis of Project Sustainability itself – a move applauded by DiPalma, providers, families and consumers. The lack of flexibility in services provided by Project Sustainability also has drawn the criticism of the court monitor.

Providers have said the funding formula does not allow them to plan on services for longer than three months at a time and makes it difficult for them to base their services in the community.

For example, Project Sustainability assigns staffing ratios according to the degree to which a person may be unable to do basic things independently, but doesn’t take into account the resources that person might need to get to a job – or hockey game – in the community.

Project Sustainability originally made it difficult for individuals to hold jobs in the community by providing work-related services only at the expense of other kinds of daytime supports.

In 2017, to comply with the work goals of the consent decree, BHDDH launched an add-on program of performance payments for providers for placing clients in community-based employment and for meeting job-retention goals.

DiPalma has said it is imperative that BHDDH finish a new rate model for private developmental disability services in time for Raimondo to introduce her budget to the General Assembly next January.

To satisfy the consent decree, the new design would have to focus on helping individuals lead regular lives in the community. Such a model would inevitably demand a greater financial commitment from the state and pose a new test of lawmakers’ values.

RI DD Study Commission To Meet March 28 To Begin Airing Recommendations For Change

By Gina Macris

The special legislative commission studying Project Sustainability, Rhode Island’s fee-for-service funding model for adult developmental disability services, will resume deliberations March 28, according to its chairman, Sen. Louis DiPalma, D-Middletown.

The commission last met in January, hearing testimony on best practices from one national expert and another from Vermont, where the system appears to be closely aligned with the needs and preferences of individuals.

DiPalma said he has spent the intervening weeks meeting one-on-one with commission members who represent the state and various segments of the developmental disability community to jump-start their analysis of expert testimony the commission has received since last fall. By the time of the March 28 meeting, DiPalma said, he expects commission members to be ready to make well-developed recommendations that identify concrete goals and the strategies for achieving them.

DiPalma said the vision of the commission is to have a more individualized, or “person-centered” system within the next five years.

He said he expects it will take two meetings to fully air the members’ recommendations on how to get there.

A review of Project Sustainability’s rates and the fee-for-service model itself would have been the commission’s first recommendation, if the state had not already launched that project, DiPalma said.

“The reimbursement model is the foundation and is pivotal to everything that is done,” he said. Project Sustainability, enacted by the General Assembly in 2011, did not reduce services or create waiting lists but was implemented on the backs of private providers and their employees, DiPalma said.

Project Sustainability also has been criticized by the U.S. Department of Justice, which found that it incentivized segregated services for adults with developmental disabilities, in violation of the integration mandate of the Americans with Disabilities Act. That finding and others resulted in a 2014 consent decree, which authorizes broad federal oversight of the state’s efforts to transform its system to a network of community-based, individualized services that put the consumer first.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) recently hired the non-profit New England States Consortium Systems Organization as a consultant in reviewing the fee-for-service model and its rates.

DiPalma has said it is imperative that the review be completed in time for Governor Gina Raimondo to submit her budget proposal to the General Assembly in January, 2020. He said he believes the commission can have an oversight role on the implementation of any changes in the rate model that BHDDH recommends.

DiPalma said the commission meeting on Thursday, March 28, will run from 2-4 p.m. in the Senate Lounge at the State House.

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.

RI "Demanding Dignity" Campaign Backs $15 Minimum Wage For DD Caregivers In Two Years

RI State Rep. Evan Shanley, D-WARWICK, Left, and George Nee, President of the RI AFL-CIO At the State House Library *** photos by anne Peters

RI State Rep. Evan Shanley, D-WARWICK, Left, and George Nee, President of the RI AFL-CIO At the State House Library *** photos by anne Peters

By Gina Macris

Rhode Island State Senator Louis DiPalma and Rep. Evan Shanley say they are introducing companion bills that would set a minimum wage of $15 an hour in two years for those who provide services to adults with developmental disabilities.

The bills were announced at a Feb. 27 State House press conference, hosted by George Nee, president of the Rhode Island AFL-CIO, to kick off a union-backed campaign called “Demanding Dignity” to prioritize a living wage for caregivers in highly demanding jobs who are paid less than fast food workers or retail clerks.

Both Nee and DiPalma said there’s not a single legislator who doesn’t believe that direct care workers are underpaid and have been underpaid for years.

The bills would be costly – an estimated $25 million in state revenue over two years, according to DiPalma.

Nee said the “Demanding Dignity” campaign aims to make the $15 rate a priority for legislators.

The best way to accomplish that aim, Nee said, is to tell and retell the personal stories that convey the impact of the current wage structure on people’s lives.

For him, Nee said, the biggest take-away from the event was the story of Nancy Tumidajski, who works at the ARC of Blackstone Valley in Pawtucket. She said she was hired in 1991 at $10.25 an hour, then double the minimum wage. Today, 28 years later, she makes about two dollars more than that, she said.

By comparison, the minimum wage is currently $10.50 an hour. The average entry-level wage for direct care workers is $11.36 an hour, according to a trade association representing service providers.

Governor Gina Raimondo has proposed raises that would add about 44 cents an hour to workers’ paychecks at a total cost of $3 million in state revenue, that would be roughly doubled by the federal match in the Medicaid program.

L To R: Noelle Siravo, Nancy Tumidajski, Louis DiPalma

L To R: Noelle Siravo, Nancy Tumidajski, Louis DiPalma

Tumidajski said her duties have included resuscitating a client who stopped breathing, performing the Heimlich maneuver – multiple times – on a client prone to choking, and last year, providing hospice care in clients’ own homes when a flu epidemic caused a widespread shortage of beds in the healthcare system. Everyone on her team volunteered for hospice duty, she said.

Noelle Siravo of Pawtucket, the mother of a 47 year-old man with significant disabilities, said he is able to live in an in-law apartment in her home only because of the “wonderful” people who provide him with skillful support and care.

“It’s a tremendous burden off my shoulders,” she said, but “the wages are insulting for what they do.”

In addition to everything else, Siravo said, direct care workers often spend some of their own money on the people they support, because many adults with developmental disabilities don’t have any families and still want an occasional treat.

Tumidajski said one in three workers at the ARC of Blackstone Valley leave their jobs in a year, and the agency has trouble recruiting replacements at pay that runs between $11 and $12 an hour. The ARC currently has 25 vacancies, she said.

The high turnover and vacancy rate threatens the quality of services and safety of clients, Tumidajski said. For the same work, Massachusetts already pays $15 an hour for direct care, and Connecticut has adopted a caregiver minimum wage of $14.75 an hour.

Jeff Perinetti, business representative for the International Association of Machinists and Aerospace Workers, the direct care workers his union represents took a 10 percent pay cut when Project Sustainability was enacted and have regained only six percent of it.

DiPalma said the meager wages paid to someone like Tumidajski are unconscionable.

The current rate model, introduced in 2011 with a $26 million budget cut, is built on the backs of workers, DiPalma said.

Established under the title “Project Sustainability, the fee-for-service model brought wholesale wage reductions without scaling back the state’s expectation for developmental disability services from private agencies or establishing a waiting list for services, he said. DiPalma, D-Middletown, is first of the Senate Finance Committee and chairs a special legislative commission that is studying the impact of Project Sustainability.

Shanley, D-Warwick, represents the Cowessett section of the city, which includes the Trudeau Center, one of about three dozen private providers of developmental disability services in Rhode Island and the place where his parents met as they cared for clients who had been stranded during the Blizzard of 1978,

The experience of helping others inspired his father, Paul Shanley, than 19, to become a police officer in Warwick, where he served 26 years, Shanley said. His mother, Mary Madden eventually became President of the Trudeau Center. She has recently been named interim director the Commuity Provider Network of Rhode Island, a trade association of private provider agencies. Both Shanley and DiPalma have previously filed legislation to increase wages for direct care workers.

Jeff Perinetti, business representative for the International Association of Machinists and Aerospace Workers, the direct care workers his union represents took a 10 percent pay cut when Project Sustainability was enacted and have regained only six percent of it.

in addition to the machinists’ union, the Demand Dignity campaign is backed by the Service Employees International Union, District 1199; the American Federation of Teachers and Health Professionals, and the United Nurses and Allied Professionals.

Nee set the tone for the event by invoking an enduring quotation from former Vice President Hubert Humphrey. Nee said that Humprey defined the “moral test of a government.” as the “way it treats those in the dawn of life, the children; those in the twilight of life, the elderly; and those in the shadows of life; the poor, the sick, and the disabled.”

“We have an opportunity, with this legislation and this campaign, to determine whether or not Rhode Island , our government, is going to be moving up to meeting that moral test of what government should be,” Nee said.

For too long, people working in the field of developmental disabilities have “too often been relegated to the shadows of our community and our government, and we’re here to say that that should not be happening any longer,” he said.



RI Governor's DD Budget Would Add $8.7 Million in Medicaid Funding For Wages, Higher Costs

By Gina Macris

Rhode Island Governor Gina Raimondo’s recently released budget proposal would add nearly $8.7 million in new funding to the system of privately-run services for adults with developmental disabilities in the next 17 months, through June 30, 2020.

Most of that overall $8.7-million-increase, $6.4 million in federal and state Medicaid money, would fund raises for workers of some three dozen private agencies that provide developmental disability services under contract with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The raises would take effect July 1. Funding for the added wages - an estimated 44 cents an hour – is carved out in the budget bill for Fiscal Year 2020 that Raimondo has submitted to the General Assembly.

The budget bill also requires that almost $1.6 million in federal-state Medicaid funds be earmarked for technical assistance to private providers changing from segregated care to community-based, integrated service to comply with a 2014 federal consent decree.

The current overall spending level for developmental disabilities, $271.7 million, would increase to $273.1 million for the budget ending June 30. In the next fiscal cycle beginning July 1, the spending ceiling would rise to nearly $280.9 million, including federal, state and miscellaneous sources of revenue.

The Division of Developmental Disabilities (DDD) draws more than half the resources assigned to BHDDH – which is currently budgeted for a grand total of almost $422.5 million. Under Raimondo’s plan, the bottom line for the entire department would grow to about $448.5 million in Fiscal 2020 – an increase of $26 million, including about $19.7 million in supplemental funding for the existing budget.

Developmental disability services are financed through the federal-state Medicaid program, with the federal government paying nearly 53 cents on the dollar.

The governor’s executive summary, however, tends to focus on the state outlay alone. It says $3.1 million in state funds would be earmarked to cover an existing deficit and an additional $3.3 million would be set aside in the fiscal year beginning July 1 for increased caseload costs.

Those budget items, combined with the state’s share of the $6.4 million proposed wage increase - $3 million – add up to $9.4 million, nearly twice the overall $5 million in new state tax dollars that Raimondo would apply to developmental disabilities for the remainder of the current fiscal year and the next one.

The state would have to use savings in other areas to fully fund Raimondo’s plan for developmental disabilities, but neither the budget language nor the governor’s narrative spells out which cost-cutting measures would fill the gap.

The first-quarter spending report for BHDDH put the projected deficit in developmental disabilities at a total of $7.6 million for the current fiscal year, including federal and state funding.

The updated report for the second quarter will not be ready until Jan. 31, according to BHDDH officials.

But at a recent press briefing on the budget, Rebeca Boss, the BHDDH director, said she is satisfied that the governor’s proposal will enable the department to balance its current budget.

Among other things, the plan would restore money in the current budget that the DDD otherwise would have saved if it had won federal approval for a “Health Home,” a Medicaid option featuring a managed-care approach that also provides for a third-party to coordinate services for individuals.

The Health Home would help DDD comply with a Medicaid rule for Home and Community Based Services which requires case management to be separate from funding or service delivery. Currently DDD is responsible both for funding and for case management, which Medicaid perceives as a conflict of interest.

Boss said BHDDH has not yet submitted an application for a Health Home option for developmental disabilities. The budget assumes that a health home plan for developmental disabilities will be approved and go into operation during Fiscal 2020, which begins July 1.

Medicaid will reimburse 90 percent of the state outlay for health homes for a maximum of two years. After that period, the reimbursement rate for health homes will drop back to the regular rate for Rhode Island, whatever it may be at that time..

To help close the current deficit, the governor recommended an additional $273,412 in state revenue for BHDDH to pay homemaker licensed practical nurses who work with adults with developmental disabilities. The Executive Office of Human Services granted them a slightly higher pay increase than BHDDH had budgeted and the General Assembly had approved.

In adding $3.3 million in state revenue for “caseload” expenditures for the 2020 fiscal year, Raimondo’s executive summary said she “accepts the Department’s (BHDDH’s) most up to date projections” on costs, “ensuring no changes to services for DD consumers and continued financing to improve achievement of consent decree mandated services.”

Last year at this time, Raimondo had proposed cutting a total of more than $18 million in federal-state funding from developmental disability services, with a spokeswoman for the Office of Management and Budget saying the proposed reduction was based on calculations made from “estimated growth rates in the cost of providing services.” She did not elaborate.

Raimondo, pressed by the independent court monitor overseeing the implementation of a 2014 federal civil rights consent decree, eventually restored the funding and pledged the state’s support of the work ordered by the federal court.

The consent decree requires Rhode Island to correct violations of the integration mandate of the Americans With Disabilities Act, reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, by ending its over-reliance on sheltered workshops and segregated day care.

This year, according to Boss, BHDDH submitted cost projections on the basis of actual claims, as directed by the Executive Office of Health And Human Services, rather than individual funding authorizations.

In the process of updating projections, the data was refined to remove claims that had been double-counted on Medicaid rolls of both BHDDH and EOHHS, according to the executive summary of the budget.

For Fiscal 2020, the governor’s budget summary highlighted three additional areas for savings:

  • ·A continuation of “residential rebalancing”, a multi-year effort to reduce the number of people in group homes, a cost-saving measure that also is intended to provide more “community-based placements such as shared living.” The budget projects $1.5 million in “residential rebalancing” in 2020.

  • Closure of one state-operated group home for an estimated savings of nearly $92,000. The staff in that location will move to other sites, reducing the need for overtime in the state-run system.

  • So-called “right sizing” of staffing at the state-run group home system to realize additional projected savings of $202,721. “Right-sizing” means staffing patterns will be reassessed and employees will re-bid jobs. This change is expected to reduce overnight staffing and further reduce overtime costs.

Mediator Steps Into Labor Dispute Over Low Wages At Northern Rhode Island DD Service Provider

By Gina Macris

Seven Hills Rhode Island and the union representing workers who assist some 250 adults with developmental disabilities have agreed to meet with a mediator in an attempt to settle a months-long labor dispute.

A union spokeswoman, Jeanne Jose, organizer for the United Nurses and Allied Professionals, said the first mediation session was Wednesday, Jan. 23, and the two sides agreed to meet again with a mediator next week. Earlier in the month, the union membership, about 200 to 220 employees, authorized the negotiating committee to call a strike, if needed, Jose said.

UNAP initially proposed a 5 percent increase in wages across the board, she said. More than half the membership makes $10.94 an hour, and a five percent increase would add about 55 cents to that rate. Thirty-nine per-diem employees, who are on call but receive no benefits, are paid $12.36 an hour. She said 12 behavioral assistants, who must have bachelor’s degrees, make $15.36 an hour.

In the most recent bargaining session in December, Jose said, management gave the union a choice: either an across-the-board increase of 13 cents an hour, or a 25-cent increase for those making $10.94 an hour and no raise for higher-paid union members.

Neither option is acceptable, she said. The union membership voted Jan. 9 to authorize the bargaining committee to call a walkout, if necessary..

Efforts to reach management, represented by Cliff R. Cabral, vice president of Seven Hills Rhode Island, have been unsuccessful.

Jose said the union also seeks to preserve health care benefits, which she described as “decent.” Employees pay 20 percent of costs, she said, but rising premiums have eroded take-home pay.

There are three other areas where the union wants improvements:

· An increase in reimbursement for transportation, from 40 cents to 45 cents a mile for direct care workers, who are required to use their own vehicles on the job. The standard reimbursement rate allowed by the Internal Revenue Service in 2018 was 54.5 cents a mile. For 2019, the IRS increased the rate to 58 cents an hour.

· Contract language that ensures employees will receive adequate training or re-training before they are tested or re-tested on protocols for dispensing medication to clients.

· Adequate staffing to ensure health and safety on an as-needed basis; for example, when someone who uses a wheelchair is too heavy for one worker to transfer from the chair to a car to go to a doctor’s appointment and return home.

UNAP has represented developmental disability workers at Seven Hills and its predecessor organizations since about 2005, Jose said. The last contract expired in June, 2018.

With direct support wages linked to government funding, the labor dispute underlines the gap between pay in Rhode Island and neighboring states for the same work.

In Connecticut, all direct care workers make $14.75 an hour, effective Jan. 1.

In Massacusetts, where they’re called Personal Care Attendants, those who belong to the Service Employees International Union make $15 an hour.

The minimum wage in Massachusetts is $12 an hour. In Rhode Island it is $10.50. Governor Gina Raimondo recently proposed raising the minimum wage to $11.10 an hour and a wage increase for direct care workers that would add about 44 cents an hour to their paychecks.

The trade association representing about two thirds of private providers of developmental disability services, including Seven Hills, has said the average entry-level wage among its member organizations is $11.36 an hour.

Seven Hills Rhode Island is affiliated with the Seven Hills Foundation, a multi-faceted human service agency which has a broad presence in Massachusetts.

Union Raises Strike Possibility At Northern RI DD Provider Over Submarket Wages; No Deadline Set

By Gina Macris

Unionized workers supporting about 250 adults with developmental disabilities have indicated they may strike at Seven Hills Rhode Island over wages that lag significantly below those in neighboring states. No deadline has been set for a walkout.

The possibility of a strike by about 180 members of the United Nurses and Allied Professionals (UNAP) was disclosed in a letter that the management of Seven Hills sent to families Jan. 15. Talks between labor and management continue, according to a source with knowledge of the negotiations.

An official of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) indicated that the union must give a 10-day notice of any walkout.

Kevin Savage, Associate Director for Quality Management, said Jan.18 that “BHDDH is in close contact with Seven Hills administration, who have put together a plan to ensure coverage of necessary services in the event that the union gives them a 10-day notice that a walk out will occur.”

He said BHDDH contracts with Seven Hills to support about 250 persons with developmental disabilities in a variety of residential settings, as well as supported employment services and non-work daytime activities.

The Jan. 15 letter to families, signed by Seven Hills’ vice president, Cliff R. Cabral, said that a work stoppage could force the agency to suspend or reduce “several program offerings.”

“Our day services program will be limited to 24 residential participants,” Cabral said. Seven Hills has 76 residential clients, according to the latest data compiled by the state.

Efforts to reach Cabral or a UNAP spokesperson were not immediately successful.

Average entry-level wages for direct care workers in Rhode Island are $11.36 an hour, according to the most recent figure released by the Community Provider Network of Rhode Island, a trade association representing two thirds of the private providers of developmental disability services in the state.

Governor Gina Raimondo has proposed an incremental raise – estimated by BHDDH at an average of about 44 cents an hour – effective July 1.

In Connecticut, entry-level direct care workers must be paid a minimum of $14.75 houirly. The Connecticut legislature approved the raises last May, even though it had not yet acted on the state budget, to avert a strike that had been planned at that time by the Service Employees’ International Union (SEIU). The wage hikes became effective three weeks ago, on Jan. 1.

SEIU also has negotiated a $15 hourly minimum wage with Massachusetts for direct care workers in that state that went into effect July 1, 2018.

In the letter to families, Cabral said that “Seven Hills Rhode Island stands with our employees and will continue to advocate on their behalf for the living wage they deserve.”

He said Rhode Island’s system of care for adults with developmental disabilities still has not recovered from the General Assembly’s $24 million reduction in services in 2011. (Final figures on actual spending put the total over $26 million.)

Despite repeated and concerted advocacy, “our state representatives continue to place funding for individuals with developmental disabilities low on their priority list,”he said. The General Assembly’s inaction has significantly “compromised the sustainability of the current system,” which, Cabral said, has been weakened by below-market compensation and high staff turnover.

“Organizations such as ours have taken several painful measures throughout the past decade in an effort to ensure our fiscal sustainability, including liquidating assets and significantly reducing our administrative resources,” Cabral wrote.

While it has adhered to the “highest delivery standards possible,” Seven Hills cannot sustain its efforts indefinitely, Cabral said. He called on UNAP to join with management “to more productively direct our collective efforts toward lobbying for a substantial investment in this year’s state budget in order to adequately address the needs of those with developmental disabilities while ensuring a living wage for the remarkable individuals who support them.”

Seven Hills Rhode Island offers a variety of services for children, families and adults, with offices in Cranston and Woonsocket. Services for adults with developmental disabilities are based in Woonsocket, covering northern Rhode Island.

'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.