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.

UNAP Settles With Seven Hills Rhode Island In Mediation That Results In 25-Cent Hourly Raise

By Gina Macris

Workers at Seven Hills Rhode Island who care for about 250 adults with developmental disabilities will receive an across-the-board raise of 25 cents an hour retroactive to last June 23, the expiration date of their previous labor agreement. The contract contains a wage re-opener in its second and final year.

The mediated settlement was ratified last month by some 200 members of the United Nurses and Allied Professionals (UNAP), according to Jeanne Jose, a union business representative. Any increase that comes from Governor Gina Raimondo’s proposed budget for the fiscal year beginning July 1 would be over and above the raises negotiated in mediation, Jose said.

In January, the union membership authorized its executive committee to call a strike, if necessary, after labor-management talks had collapsed the previous month.

According to Jose, the union had originally sought a 5 percent wage increase across the board. That percentage works out to about 55 cents an hour for those who had been making $10.94 an hour – more than half the membership. By comparison, the minimum wage in Rhode Island is currently $10.50 an hour.

Jose said 39 per-diem employees, who are on call but receive no benefits, were paid $12.36 an hour under the terms of the previous contract. Jose said 12 behavioral assistants, who must have bachelor’s degrees, made $15.36 an hour.

Talks fell apart in December when management offered a choice of 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.

Jose said “people were happy” with the wage settlement, taking into account Rhode Island’s chronic underfunding of developmental disability services, which has resulted in low wages and high turnover.

UNAP is one of several labor organizations affiliated with the AFL-CIO which support companion bills which have been introduced in the General Assembly to create a $15-hour minimum wage for direct care workers.

In a statement, Cliff R. Cabral, vice-president of Seven Hills Rhode Island, said, “We are pleased that we were able to come to a resolution and will continue to advocate on behalf of those who provide crucial supports to adults with developmental disabilities.”

In addition to the raises, Jose said, the union won a five-cent increase in mileage reimbursement for employees who must use their personal vehicles on the job – from 40 cents to 45 cents an hour – and other changes in contract language.

According to Jose, new language ensures that:

  • Employees will receive adequate training or re-training before they are tested or re-tested on protocols for dispensing medication to clients.

  • Management will provide adequate staffing to ensure the health and safety of workers and clients on an as-needed basis; for example, when two people are needed, instead of one, to help a heavy person using a wheelchair to get in and out of a car for a visit to the doctor’s.

Seven Hills, based in Woonsocket, is a private agency that provides residential and day services for adults with developmental disabilities in northern Rhode Island.

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 Parents: System Of Care Fails To Address Supervision of Adults With DD In Hospital Setting

Jane Sroka * all photos by anne peters

Jane Sroka * all photos by anne peters

By Gina Macris

Access. Quality. Safety.

Those are the three words chosen by officials of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to sum up their overarching goals in serving adults facing intellectual and developmental challenges.

But at a public forum in Warwick Feb. 5, Jane Sroka, the mother of a man with intensive special needs, said the reality falls far short of those three goals when adults with special communications and behavioral needs are hospitalized.

The Medicaid dollars to which Sroka’s son is entitled through Home and Community-Based Services funded through BHDDH stop at the hospital’s door.

“My son needs 24/7 eyes-on supervision at all times. It’s huge. It’s life and death. That’s what it is,” she said.

In the hospital, Sroka said, “I was with him 24/7. He was awake 24/7. I was awake, 24/7. That was tough. It’s grueling on everybody.”

You’re talking about putting safety first? This is safety first,” Sroka said.

Not providing that round-the-clock supervision, in her son’s case, would have been dangerous, she said.

It’s not that the nurses don’t care, she said, but “if I wasn’t there, they wouldn’t have a clue about what to do or how to do it or when to do it, or whatever. It’s dangerous. And it has to change,” she said. She said she knows she is not alone.

Gail Peet had a similar story. She said her daughter, 47, who is non-verbal, became extremely agitated when a feeding tube was inserted.

After her daughter was transferred to a nursing home, Peet said, she asked the staff to put a binding around the feeding tube to prevent her daughter from ripping it out.

The nursing home refused, on the grounds that the binding would constitute a “restraint,” Peet explained after the forum. The next morning, the staff discovered that Peet’s daughter had indeed ripped out the tube, which had to be re-inserted, causing her the additional pain of a second procedure.

In neither Peet’s nor Sroka’s case did there appear to be a plan for in-hospital or discharge care that addressed complications that could arise from individuals’ particular challenges as persons with developmental disabilities.

Rebecca Beaton

Rebecca Beaton

And Rebecca Beaton, who uses a wheelchair and must make a great effort to shape each word, said she, too, needs 24-hour care if she goes to the hospital because she has a speech problem and not everyone understands her. A support person seated next to her at the forum repeated her words for clarity.

John Susa, former chairman of the Rhode Island Developmental Disabilities Council and the father of a man with extensive needs, said there used to be a pool of state funds — outside the federal-state Medicaid structure — that was once used only in emergencies involving adults with developmental disabilities. He suggested that officials re-visit that idea.

Kerri Zanchi, Director of the Division of Developmental Disabilities (DDD),, stood at the podium of a meeting room in the Warwick Public Library, taking notes.

Kerri Zanchi

Kerri Zanchi

Medicaid separates Home and Community Based Services (HCBS) from hospital services to avoid duplication, Zanchi explained.

“But I hear you,” she told Sroka and Peet, that the situations they described were not about duplicate services.

Zanchi raised the possibility that an upcoming initiative, the creation of a “Health Home,” might open an opportunity to provide the kinds of supports that Sroka and Peet needed in the hospital and nursing home. A Health Home is a Medicaid-spawned concept for the management of services, not a bricks and mortar facility.

“It is so important for the individuals we love and support to have that consistency and continuity of care,” she said.

Earlier in the forum, Zanchi had explained the Health Home as an entity that would manage a program of individualized services around the unique needs and preferences of a particular person served by DDD.

FROM OLMSTEAD TO HEALTH HOMES


Medicaid created the Health Home option to separate the design and management of services from the funding and delivery of services. The goal is to avoid any conflict of interest that might compromise the quality of care.

The states must provide so-called “conflict-free case management” by 2022 to comply with the Medicaid Home and Community Based Services Final Rule, issued in 2014 to align Medicaid with the integration mandate of the Americans With Disabilities Act.

According to the 1999 Olmstead decision of the U.S. Supreme Court, the integration mandate says individuals with disabilities must have access to the supports they need to live regular lives in the least restrictive environment that is therapeutically appropriate – and that environment is presumed to be the community.

In line with Olmstead, as well as a 2014 consent decree in which Rhode Island has agreed to desegregate its daytime services for adults with developmental disabilities, state officials and the developmental disability community have embraced the idea of “person-centered planning,” which puts the needs and preferences of individuals at the core of any service plan.

But at the forum, Mary Beth Cournoyer, the mother of an adult son with developmental disabilities and a member of the Employment First Task Force, suggested “whole life” planning as a more encompassing term.

“How do we build lives? It’s 24 hours a day, seven days a week,” she said. The Employment First Task Force to which she belongs was created by the consent decree to serve as a bridge between the community and state government.

Zanchi said state officials will meet with their community partners, including families and providers, to ask them to help draft the design for a Health Home for adults with developmental disabilities before the application is submitted to the federal Medicaid program.

She said DDD hopes to have a Health Home up and running in about 12 months.

NEW WORKPLACE LAW AFFECTING SOME DD SERVICES

The forum also brought to light apparently unintended consequences of the Healthy and Safe Families and Workplaces Act, which went into effect last July 1, guaranteeing all workers get time off to go to doctors’ appointments and attend to other important personal and family needs. Companies with 17 or more employees are required to give paid leave.

Sue Babin of the Rhode Island Developmental Disabilities Council said that those who direct services for themselves or a loved one are receiving conflicting advice from fiscal intermediaries about whether the law applies to support staff for adults with developmental disabilities.

And some individuals who are advised the law does apply and are granting time off to their support staff are having problems finding substitute workers, Babin said.

Zanchi suggested a separate meeting with families that organize and direct their own services to discuss the impact of the new workplace law and any other inconsistent advisories they may be receiving from fiscal intermediaries, who control the individualized budgets the state authorizes to be spent on services for particular individuals.

RATE REVIEW GEARING UP

In an overview of changes at DDD, Zanchi announced that the division is about to embark on a review of its fee-for-service rate model for reimbursing private agencies that provide most of the developmental disability supports in state.

To that end, BHDDH has selected an outside consultant for the remainder of the current fiscal year and the new budget cycle beginning July 1.

Zanchi declined to name the contractor until a purchase order for services has been signed by the state purchasing office. She did say, however, that the consultant was not Burns & Associates, the Arizona-based company that helped a previous administration devise Project Sustainability That is the name for the existing fee-for-service model that doles out payments for daytime services in 15-minute increments that must be documented by each worker for each client served.

Zanchi said $500,000 for the consultant was budgeted in the current fiscal year, and an equal amount is in the governor’s proposal for the next budget.

To expedite the rate review, the contractor was selected as a “sole source” provider, without the months-long process or issuing a request for proposals and reviewing bids, Zanchi said.

NEW YOUTH AND TRANSITION ADMINISTRATOR

Zanchi announced that Susan Hayward, a veteran social casework supervisor, has been named to the new position of Youth and Transition Administrator, to coordinate a smooth shift for high school special education students moving into adult services.

Employment opportunities and other transitional servicesfor teenagers and young adults are a prime concern of the independent court monitor overseeing implementation of the 2014 consent decree, as well as an earlier interim settlement agreement affecting only youth and adults in Providence.

The 2013 interim settlement agreement addressed violations of the integration mandate of the ADA that involved a special education program at the Birch Academy of Mount Pleasant High School being used as a feeder program for a former sheltered workshop in North Providence called Training Through Placement. The agreement is set to expire July 1, 2020, at the discretion of the U.S. District Court.

BHDDH officials presented a PowerPoint of information covered at the public forum. To view it, click here.

The advocacy group RI FORCE (Rhode Island Families Organized for Reform, Change, and Empowerment) recorded the public forum and has posted the video, in three parts, on its Facebook page. To connect to the video, click here.

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.