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

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

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

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

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.

Donna Martin, Leader Of RI DD Provider Network, To Take On New Role At National Level

Donna Martin * Photo By Anne Peters

By Gina Macris

Donna Martin, the leader of a trade association representing two thirds of Rhode Island’s private providers of developmental disability services, will move to a new national advocacy post effective March 1.

Since 2005, Martin has worked as executive director of the Community Provider Network of Rhode Island (CPNRI), helping about two dozen members weather drastic cuts in state and federal Medicaid funding in imposed by the General Assembly in 2011, with rippling effects on services for adults with developmental disabilities that still linger.

Effective March 1, Martin will be Director for State Partnerships and Special Projects at the American Network of Community Options and Resources (ANCOR) – the national umbrella organization for CPNRI and 54 other trade associations representing other states.

In a recent memo to CPNRI members, Martin said she had not been looking for a new job because she loves her work in Rhode Island.

“It has been a remarkable experience which has been a major influence on my professional path,” Martin said.

The opportunity to do similar work on a national scale “very unexpectedly presented itself, and I feel it’s the right time for me personally and professionally to embrace it,” Martin said.

Until now, Martin has been a member of ANCOR’s Board of Directors, an elected position she said she has resigned to join the staff. She said she will not have to relocate to the Washington area to take the job.

In her new role, she said, she will lead the work on a federal grant ANCOR has received to help providers best prepare for implementing managed care initiatives and also support state associations and help build their participation in the national organization.

Martin said that during her 19 years at CPNRI – she joined the staff in 2001 – she has developed “really strong relationships with members” of the organization.

“I understand the commitment they have made” to provide the best possible support to a vulnerable population, “in spite of difficult financial conditions and a draconian regulatory environment,” Martin said.

“That’s what strengthened me in my work,” she said.

Martin said she would advise her successor to “continue strengthening relationships” with the state legislature, the executive branch of government, and others. “Focus on those relationships,” she said.

“We really do better when we’re building in the same direction,” Martin said.

Streamlined RI DD Regulations Well-Received at Hearing; Public Comment Runs Until Oct. 6

By Gina Macris

A public hearing Sept. 17 on proposed regulations for developmental disability services in Rhode Island lasted less than 15 minutes – a brevity which seemed to reflect well on the state’s rule makers and the committees that helped streamline hundreds of pages of material, some of which dated back more than a decade.

Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), said as much. She commended all state officials involved in drafting the proposed regulations, particularly those in the Office of Facilities and Program Standards and Licensure, “for their fidelity to an open stakeholder engagement process as these regulations were reviewed and updated.” The office is part of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Representatives of service providers, families, advocacy organizations, and adult consumers of services all participated in a review process launched a year ago.

Martin did find some terminology that she said needed correcting. She said those in the developmental disability community take exception to the identification of some among them as “patients” who may be “mentally retarded.”

The term is so offensive to those with intellectual or developmental disabilities and their supporters that there is a national campaign to eradicate it. It’s called “Spread The Word To End The Word”.

In 2010, Congress passed Rosa’s Law to replace the term “mental retardation” with the words “intellectual disability” in relevant federal statutes. Most states have followed the federal government’s lead, according to the Institute on Disability at the University of New Hampshire.

The lone instance Martin spotted in the overall proposal was not in developmental disability regulations themselves, but in a department-wide rule regarding the duty of certain officials to report suspected neglect or abuse of vulnerable individuals.

Martin also objected to proposed regulations she said would be burdensome or costly for private service providers, including:

• having to pay for background checks for potential employees. “This is a costly, unfunded mandate, and we urge the state to enact a policy that aligns with state statute ensuring that the state pays for or reimburses” developmental disability and behavioral healthcare providers for these costs, she said.

• treating outside providers of temporary “respite” care as agency employees, which would “require a significant change in policy and practice and was not vetted as part of the stakeholder process.”

• keeping health care records for 10 years instead of the current 7 years.

• requiring agency staff to receive four hours a year of fire safety training, which is “excessive and reduces the available training time (for) other equally important issues.” Instead, regulations should “suggest that all staff receive annual fire safety training.”

In another comment, Martin said that the definition of the “staff” of developmental disability service organizations licensed by the state should not include interns or volunteers, who are not employed by these providers.

The public comment period ends Oct. 6. Comments may be addressed to Gail Theriault, Esq., Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, Office of Legal Counsel, Hazard Building, 41 West Rd.,Room 241, Cranston, RI 02920.

Artist And Others Who Rely On State-Funded Support Speak Up For What Matters To Them

By Gina Macris

Most people don’t  give a second thought to what it takes to meet a friend for coffee or a shopping foray. They just call or text and go. 

But for Wendy LeBeau, a Rhode Islander living with the challenges of developmental disabilities, arranging a casual get-together is a big deal. She’d have to get someone to drive, not so easy when her schedule of state-funded supports allows limited time for one-on-one service.

 On Aug. 7, LeBeau joined some 50 people at an event space next to The BRASS in Warren– an art gallery where she works – for the first of several  “Community Conversations” sponsored by the Community Provider Network of Rhode Island, a trade association of private service providers that support adults with developmental and intellectual challenges.

When LeBeau was asked about her ability to connect with friends, she replied “only at work.”  She is a contributing artist at The BRASS, where she has created abstract canvases of dancing, swishing color. 

The work of LeBeau, which features a carefully chosen palette and controlled style that belies the flowing compositions, has been shown at the National Portrait Gallery at the Smithsonian Institute and an annual Art Ability exhibit at Bryn Mawr Rehab Hospital in Philadelphia.

LeBeau’s comments, as well as those of others, put a face on what it means to depend on others to arrange even a simple outing.  

The remarks responded to questions posed by Donna Martin, executive director of CPNRI, who made her way around the audience, asking individuals seated in a huge circle of chairs to share their experiences, including any barriers they faced to feeling included in their communities.

In various ways, LeBeau and others pointed to a common underlying theme – a shortage of qualified staff available to individualize services so that adults with developmental disabilities may access their communities for work and leisure, as envisioned by the Americans With Disabilities Act. 

Margaret, who uses a wheelchair, said as much: “We need more staff.”  

Since a $26 million funding cut by the General Assembly forced private service providers to slash wages in 2011, the field has been plagued by high turnover and difficulty among employers in recruiting and retaining new staff.  At the same time, a federal consent decree in effect since 2014 requires more training and professionalism in the way adults with developmental disabilities receive support services. 

Since 2011, there have been a few incremental wage increases, but the field of direct care has not recovered. 

Martin puts the current average pay for direct service workers at about $11.45 an hour.  That’s $1.30 above the minimum wage of $10.10. Rhode Island’s minimum wage is set to increase to $10.50 January 1, 2019, but the pay for those who work with adults with developmental disabilities will remain the same. 

Darlene Faust, Director of Self-Advocacy and Work Preparedness at Looking Upwards, cited the labor shortage and a lack of adequate transportation as barriers to inclusion.

She said her agency recently lost a staff member to Walmart.

After the meeting, Faust elaborated on the staffing situation. When workers call in sick, she said, she and others in management often must fill in to provide direct support, because the back-up pool is so small.

And when the agency is short-staffed, trips into the community must be prioritized. Clients must get to their doctors’ appointments and to their jobs no matter what, she said. 

Faust has worked with adults with developmental disabilities for 20 years, she said, because “I love it.”

But the struggles are “heartbreaking right now,” she said. “We’re all in it together. It’s all the same community, whether you’re providing service or receiving support.”

“People outside the community don’t always understand,” she said.

A number of people who spoke in American Sign Language said that a lack of interpreters posed barriers in various areas of daily living, including their ability to find jobs.

Meanwhile, a Woonsocket man who called himself Tim said he is 28 and has been looking for work since he was in high school.

Although several  prominent  corporate employers  have taken the lead in hiring adults with developmental disabilities in Rhode Island, Tim said he believes there is still “a lot of prejudice out there” against taking on workers who face intellectual or developmental challenges. 

He said it would be helpful if agencies providing employment supports could offer “task-oriented vocational training” to job seekers before they actually apply for a particular position.

The “community conversation” is the first of five such meetings planned by CPNRI in the coming months to cultivate and encourage sustained grass-roots advocacy on issues affecting anyone with a stake in services for adults with developmental disabilities, Martin said after the meeting.

The schedule for the remaining conversations, in different areas of the state, is still being finalized, she said.

CPNRI also plans candidate forums for legislative and gubernatorial candidates after the September primary elections, Martin said.

In a show of hands, about two thirds of the audience indicated they were registered to vote, including most of those who receive services funded by the state.

RI DD Advocates Warn Of 'Massive Retrenchment' From Proposed $21.4 Million Spending Reduction

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

Donna Martin, executive director of the Community Provider Network of Rhode Island,  speaks during the Day Of Action, sponsored by the provider network. Standing, l to r, are Rep. Deborah Ruggiero, (D-Jamestown and Middletown); Rep. Dennis M. Canario, (D-Portsmouth, Little Compton and Tiverton), and Rep. Teresa A. Tanzi, (D-Narragansett and South Kingstown.  Seated on the steps below the State House Rotunda are advocates representing the service provider Spurwink RI. 

By Gina Macris

Rhode Island would see a “massive retrenchment” in services for adults with developmental disabilities if Governor Gina Raimondo’s proposed budget is enacted for the next fiscal year, a spokeswoman for providers told members of the House Finance Committee at a hearing March 29.

Pam Goes 

In human terms, Raimondo’s plan to cut $21.4 million from current spending levels would diminish the quality of life for some 4,000 individuals whose care is already undercut by low wages and high turnover among caregivers, said Pam Goes of Warwick, who has two sons with developmental disabilities, including one who cannot express his needs verbally. 

Goes delivered the same message at a “Day of Action” in commemoration of March as Developmental Disability Awareness Month under the State House Rotunda in mid-afternoon as scores of adults with disabilities and their supporters lined the steps leading to the House and Senate.  

State Sen. Louis DiPalma, D-Middletown, told the crowd that “people with developmental disabilities have the ability to lead a full and prosperous life. That’s why I’m here.'

Rep. Teresa Tanzi, D-Narraganset and South Kingstown, said that for the compassionate work they do, the wages of direct care workers are an “injustice.”

Tanzi, who chairs the Human Services Subcommitte of the House Finance Committee, presided over the budget hearing later in the afternoon.

Of the overall $21.4 million reduction from current spending levels in the next fiscal year, $18.4 million would come from private the agencies that provide most of the services and $3 million would be taken from a state-operated system of group homes.

Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), did not mince words when she addressed Tanzi and other members of the House Finance Subcommittee.

She said “there is no way” that service providers will be able continue efforts to comply with new federal Medicaid regulations requiring integrated, community-based services and a 2014 federal consent decree that focuses on competitive employment for adults with developmental disabilities.

Needed Changes Are "Not Going To Happen" 

Compliance with the 2014 consent decree and the new Medicaid regulations, called the Home and Community Based Final Rule, depends on system-wide changes in the manner of care, and “that’s not going to happen” with an $18 million cut to private service providers, Martin said.

Instead, there will be a “tremendous reduction” in services, she said, with agencies forced to prioritize the health and safety individuals in their care. Employment –related services and the services necessary to provide community integration will suffer if the agencies must absorb an $18 million, Martin said. Workers’ hours and wages – which hover slightly above minimum wage – would be cut.

David Reiss, CEO of the Fogarty Center, the largest non-profit service provider in the state, said the agency simply cannot survive if the state imposes the $18.4 million reduction across the board. It represents about a 7 percent cut in spending. 

Reiss said he has closed five group homes in the past year, not because of a lack of demand but because he couldn’t find enough workers to staff them. Staff turnover is about 40 percent, he said. 

The starting wage at the Fogarty Center is $10.50 an hour, he said. Although the General Assembly has raised the pay for direct care workers slightly in the past two years, the minimum wage also has increased. It is now $10.10 and is scheduled to go up again next January to $10.50 an hour. Massachusetts has an $11.00 minimum wage and has agreed to pay direct care workers a minimum of $15 an hour beginning in July.

Raimondo’s budget includes no money for raising the wages of direct care workers this year, although a bill in the legislature would link increases in the minimum wage to raises for front-line staff, according to Martin, the CPNRI director.

High Staff Turnover Worries Parents

Pam Goes, the Warwick mother, discussed the impact of the high staff turnover on her non-verbal son.

“We feel like we are constantly starting over,” she said. Her son Paul needs to trust his caregiver, and that trust comes only with time and continuity of high quality care.

“It’s a difficult job for them to be on top of his moods ,” she said. “You need to get to know him,” she said. Paul will often test new staff to see how much he can get away with, she said, and he can become aggressive.

“I worry that there are so many people in and out of his life,” she said. “I worry that his communication is so limited. I especially worry about what happens when I’m gone,” she said.

“I want to advocate for a sustainable system where people live a good life,” she said. “It’s a lot of stress knowing the situation could become more untenable.”

About four thousand people receive services, she said, and “every family has a story like mine.”

Tom Kane, the CEO of AccessPoint Rhode Island, said Goes reminded him of the best compliment his agency ever received: “The work you did for our son allowed us to be the family we wanted to be."

A Call For More Funding

The budget is “about priorities. It’s about morality, and it’s about people” he said. “It should be about people.”

Kane called on the legislators to approve a proposed $15.3 million budget increase to cover cost overruns in the current fiscal year, as Raimondo has proposed, and then to add another $15 million in the budget cycle beginning July 1 to deal with a structural deficit and allow some growth.

Raimondo’s budget proposal does not acknowledge the structural deficit, he said. Instead her plan only temporarily grants additional funding, only to take it away in the next fiscal year.

The General Assembly approved total spending of $256.9 million for the current fiscal year. Raiimondo’s proposal would increase that figure to to $272.2 million. But in the fiscal year beginning July 1, her bottom line would drop to  $250.8 million. That figure is  $6.1 million less than the enacted budget and $21.4 million less than the temporary budget expansion Raimondo has proposed through June 30.

Kane presented figures which showed Rhode Island spends significantly less on adults with developmental disabilities than neighboring Massachusetts and Rhode Island.

The State of the States in Developmental Disabilities, a research project sponsored by the University of Colorado, tracks residential costs for adults with intellectual challenges. In 2015, the latest year for which data is available, the national average for residents of institutions with 16 or more beds was $256, 400 per person.

• Massachusetts spent $287,434 per person
• Connecticut spent $403,496
• Rhode Island spent nothing in that category. All those who would be in institutions in Massachusetts or Connecticut live in group homes in Rhode Island, Kane pointed out.

The average cost for group homes with six or fewer residents nationwide was $129,233 in 2015, according to the State of the States.

• Massachusetts spent $170,682 per person
• Connecticut spent $172,067 per person
• Rhode Island spent $114,973 per person                                       

Kane said the average per-person cost in Rhode Island is skewed upward by the state-operated system of group homes. According to the House Fiscal Office, the average per-capita cost for 139 residents of the state operated system is $207,251.

In the privately-operated group homes, however, the state spends about $60,000 a year per person, Kane said. Roughly 1200 individuals live in houses run by private agencies like Access Point RI  and the Fogarty Center.

Controversy Continues over Assessment

Kane turned to a discussion of the Supports Intensity Scale, a controversial assessment methodology that uses lengthy interviews to determine the level of services needed by persons with developmental disabilities on a case-by-case basis. It was introduced in 2011, ostensibly to correct “special considerations” for individual clients that state officials said posed a problem because they were driving up costs, Kane said. 

Ironically, he said, the assessment has prompted many more appeals of individual funding than the number of “special considerations” that had been granted previously.

Some people see the assessment as a problem since it was revised in November, 2016, because it has it has led to larger awards, Kane said.  A House fiscal analysis says the new assessment has added $17 million to developmental disability costs in the first 12 months it was used. 

Kane said service providers believe that the results of the original assessment were “manipulated to back into a budget that didn’t accurately reflect the needs of people.”  

The revised assessment, the Supports Intensity Scale – A, is being used “far more appropriately now,” he said.

The House Fiscal Advisor, Linda Haley, noted a “moratorium” in the use of the SIS-A. The director of the agency responsible for developmental disabilities, Rebecca Boss, explained that it was temporary, to allow officials to review their implementation of the revised assessment. 

A total of 46 errors in funding were corrected (see related article) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals continues to use the assessment for new entrants and for regularly-scheduled re-evaluations of clients. Boss said.

If an appeal includes documentation of changes in a person’s medical or behavioral needs that are likely to be long term, perhaps as part of the aging process, a client will receive a re-assessment with the SIS-A ahead of schedule, added Kerri Zanchi, Director of the Division of Developmental Disabilities.

Kevin Nerney, a spokesman for the Rhode Island Developmental Disabilities Council, discussed several initiatives that are intended to both improve services in compliance with federal law and cut costs over the long term.

But Rhode Island is not there yet, he said.

“We don’t want to destroy one system (of services) before creating a new one,” Nerney said. “We don’t want to leave people behind based on an arbitrary fiscal goal rather than the needs of people.”

He said he knows that some eligible individuals are unable to find services that fit their needs, alluding to an increase in the number of individuals who are receiving only case management  during the last couple of years. That figure jumped from 451 in 2016 to 643 this year.

“On paper, it may look like savings” for the state, Nerney said, but some of those families “are in crisis.”

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here are the numbers:   

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Budget Testimony: Need For DD Raises Critical, Stable Services Demand Double Current Funding

tom Kane                         RI capitol tv Image

By Gina Macris 

This article has been updated. 

As others had done before him, Tom Kane told members of the House Finance Committee that he “could not stress enough” the importance of the General Assembly approving an additional $6.1 million to lift the poverty-level pay of some 4,000 front-line employees of private agencies under contract with the state to care for adults with developmental disabilities.  

At the same time, Kane, CEO of AccessPoint RI, one of those private agencies, said in a hearing April 11 that the overall funding for developmental disabilities is only about 50 percent of what is needed for service providers to regain the financial stability they once had and help their clients receive the supports they need and deserve. 

All together Governor Gina Raimondo seeks General Assembly approval for raising the currently enacted developmental disability budget of $246.2 million by $10.5 million over the next 14 months, with $4.4 million of the increase applied before June 30. Another $6.1 million would be added for the fiscal year beginning July 1, for a total of $256.7 in the fiscal year ending June 30, 2018.

Kane explained to members of the Finance Committee’s Human Services Subcommittee, led by Rep. Teresa A. Tanzi, D-South Kingstown and Narragansett), the different kinds of pitfalls he saw in Raimondo’s attempts to offset the cost of the raises by cutting expenses in other areas – or not covering some necessary spending at all.  

For example, Kane said, AccessPoint had a $107,000 increase in health insurance rates this year. ”There is no money” to cover that cost, he said. “We spend almost $1.2 million in health insurance for 158 people,” he said.  Kane said he could not expect his employees, many of whom make less than $11 an hour, to contribute more to health insurance, so other adjustments were made. He did not elaborate. 

“But at some point there’s going to be a collision between all these additional costs” and direct care workers, Kane said. In written remarks, he said the “cost of other insurances, building maintenance, rent, vehicles, fuel and office supplies continue to increase, adding to the financial strain on organizations. These costs should not be seen as extraneous. They directly relate to our ability to focus our full attention on good quality service provision,” Kane said.

He also zeroed in on some line-item savings that Raimondo has budgeted to offset the cost of the second consecutive raise for direct care workers, particularly the plan to reduce group home costs by $2.1 million in state funds. That ongoing effort, driven by economic and policy considerations, aims to move group home residents to less costly shared living arrangements in private homes - a process that requires clients to actively agree to the change. 

During the transition, there must be a consideration for maintaining the living arrangements of the individuals left behind in the group homes, Kane said, recalling a case in which two of four people in one AccessPoint home opted for shared living. Because the agency could not afford to keep the house operating with only two residents, it sought supplemental funds from the Division of Developmental Disabilities for a few months to cover outstanding expenses while it figured out its long-range plan, Kane said. The home finally closed, he said.

The example illustrates how, during a transition, “you are balancing two systems at the same time, “ Kane said.

“If you don’t pay attention to the current system with the same amount of zeal as the new system, people will get lost,” he said.

In fact, the state so far has been unable to realize much savings from the emphasis on shared living, only $100,000 of a target of $2.6 million in state funds in the current fiscal year, according to officials of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Since last July, a total of 48 group home residents have committed to shared living. That figure is 18 shy of a target of 66 individuals for the fiscal year ending June 30.

Kerri Zanchi, Director of the Division of Developmental Disabilities, said that of the 48, 28 have moved since December, when the division began addressing issues that were barriers to shared living arrangements, like a need for physical modifications to some houses to make them more easily accessible, as well as extra medical and behavioral supports needed in the host homes. She said the division is also considering a range of other alternatives to group home living.

Ultimately, Kane said, a budget is a “representation of the values of our state.”  The care for people with disabilities and the salaries paid to caregivers either will reflect the dignity and respect afforded valuable members of society, or they won’t, Kane said.

 “I understand you have a lot of very difficult decisions to make,” he told the legislators, “and the numbers (revenues) aren’t looking great this year, which are going to make all those decisions even tougher.”

But Kane asked them to look at historical spending for developmental disability services, which he said are now only $9 million more than they were in 2010. In the meantime the demands of a 2014 federal consent decree with the U.S. Department of Justice, as well as new Medicaid rules for Home and Community Based Services (HCBS), make the job of supporting individuals with disabilities much more complex and expensive, he said. 

Traditionally, he said, support has been provided in “congregate” settings, or facilities “where you have groups of ten people with one staff person. “

“Under the consent decree they have to be either at a job or in the community,” he said. Those settings demand ratios of one staffer for each client, or no more than three clients, depending on the circumstances, Kane said.  In addition, the consent decree requires job coaches to be trained to a specific certification. and trained workers will demand higher pay, Kane said.t

The latest statistics indicate the current average pay for direct care workers is $11.14 an hour, before taxes, a figure that reflects a raise of about 32 cents effective last July 1, according to Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association which represents 25 of some three dozen private providers of developmental disability services.

The hourly reimbursement rate the state pays the employers for direct care workers is $11.91, which includes both wages and most – but not all – of employers’ actual costs for overhead and fringe benefits. That figure is still lower than the hourly reimbursement rate of $12.03 the General Assembly authorized in July, 2011  at the same time it cut a total of $24 million for private provider services, according to a chart prepared by James Parisi of the Rhode Island Federation of Teachers and Health Professionals.

In October, 2011, three months after the General Assembly acted, BHDDH reduced the actual reimbursement rate to $10.66 an hour, according to Parisi’s calculations.  Since then, the rate has been climbing incrementally to its current level of $11.91.

Parisi represents workers at the Trudeau Center in Warwick, where the starting salary is now $10.71 an hour.

Tori Flis, a service coordinator at one agency, which she did not name, said that even though there has been a slight increase in wages in the last year, the turnover is “just as high.”

Martin, of CPNRI, put the average turnover at one out of three workers a year, or 33 percent, although it varies from one agency to another.  Employers are unable to fill one out of six vacancies, and it costs an agency an average of $4900 every time it must search for a replacement and train a new hire, Martin said.  

Markella Carnavalle, who works at Trudeau, described the impact that turnover can have on individuals with developmental disabilities.

One client, who had grown attached to a worker who had to leave, was “crying for weeks,” she said.

That person had behavioral issues and didn’t want to work or eat, Carnavalle said. The client believed the worker left because “they didn’t want to be with me,” Carnavalle said, but “you can’t say the person needed more money. They don’t look at it that way.”

“You become a part of their lives and they become a part of yours” over time, Carnavalle said.

Flis, meanwhile, said the workers she supervises all have two and three jobs to make ends meet. Some work as many as three consecutive 12-hour shifts at different agencies – a total of 48 hours straight.

Those kinds of conditions lead to burnout, abuse and neglect, Flis said. The only reason she can afford to work one job at Trudeau is that she is married to a teacher who has a good salary and fringe benefits, including a pension, Flis said.

In another part of the current budget,  BHDDH officials and the legislators disagreed on whether there is funding for a developmental disabilities ombudsman, a position approved by the General Assembly last year after a woman died in a state-run group home. The state-run residential system is separate from the private system. 

The legislators and a member of the House fiscal advisory staff, Linda Haley,  said a total of $170,000 had been included in the BHDDH budget for the position.

Representing BHDDH, Christopher Feisthamel, the chief financial officer, and Zanchi, the developmental disabilities director, both said they understood it was an “unfunded mandate.”  Haley and BHDDH officials spoke informally after the hearing but reached no agreement on the status of the position.

(This article has been updated to correct the total cost of health insurance for AccessPoint RI, which is $1.2 million, not $12 million, according to CEO Tom Kane.)

Low Wages Create Labor Shortage in RI DD Services; Advocates Testify for Higher Pay

By Gina Macris

Low wages for workers who provide direct care for adults with disabilities in Rhode Island have led to such a crisis that some agencies lose 80 percent of their front-line staff within six months, although the average annual turnover rate is 33 percent.

To fill the gap, their employers spend millions of dollars in overtime and in training new hires, only to lose them again.

Advocates for the developmental disability service system spelled out the consequences of poverty-level wages for direct care workers during a hearing before the Senate Finance Committee March 21.

A Rhode Island College expert submitted written testimony which said that an underpaid workforce results in instability, anxiety, and a diminished quality of life in the people it serves. 

The new developmental disabilities director, Kerri Zanchi, also linked the stability of the workforce to the quality of services and outcomes for the people it serves. 

Governor Gina Raimondo has proposed adding $6.1 million for raises to direct care workers in the budget beginning July 1. If it passes, it would provide the second annual raise –albeit a modest one – for some 4,000 part-time and full-time caregivers.

The first raise was enacted under pressure from federal enforcement of a 2014 consent decree. The $5-million line item added about 36 cents an hour for front-line caregivers, giving them an average of $11.18 an hour retroactive to July 1, 2016, according to Sen. Louis DiPalma, D-Middletown, the first vice-chairman of the Senate Finance Committee.

DiPalma is leading a drive to increase the average wage for direct care workers and home health care workers to $15 an hour by July 1, 2021. Testimony during the hearing indicated that Massachusetts is on track to reach that goal in 2018.

DiPalma also noted that Rhode Island’s minimum wage rose 30 percent between 2012 and 2016, from $7.40 an hour to the current $9.60 an hour, while the average pay for direct care workers increased 1.6 percent during the same period.

Governor Raimondo is seeking a 90-cent increase in the minimum wage, or $10.50 an hour, for the fiscal year that begins July 1.  

The interstate disparity in wages, compounded by the fact that many Rhode Island residents can just as easily work in Massachusetts as in their home state, puts the developmental disability system at a distinct disadvantage in competing for employees.

Rhode Island’s system is “economically inefficient,” said Jim Parisi, spokesman for the Rhode Island Federation of Teachers and Health Professionals, who represents workers at Trudeau Memorial Center, one of about three dozen private developmental disability service providers in the state.

Donna Martin, director of the Community Provider Network of Rhode Island (CPNRI), said that an average of about 16 percent of jobs go unfilled, forcing employers to use overtime to fill vacant shifts, particularly in situations where safety requires a certain minimum level of staffing.

In some agencies the job vacancy rate is as high as 25 percent, according to Rebecca Boss, the acting director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Martin, meanwhile, said reports from 18 of the 25 CPNRI member organizations indicate they spend a $2 million a year on overtime, suggesting that the total statewide could be higher. Turnover, which includes training new hires, costs an average of about $4900 per person, she said.

A raise this year is expected to be slightly bigger than the average of about 36 cents an hour enacted in the current year. The exact amount is difficult to calculate in advance because the rate the state pays providers reflects wages and some, but not all, overhead costs, Martin said. And overhead costs vary from one provider to another.

The workforce crisis is the biggest single issue her membership faces, Martin noted.  Data she submitted to the committee indicated that the demand for staffers who provide direct support of adults with developmental disabilities is expected to grow 38 percent by 2022.

In written testimony, A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, linked the labor shortage to a diminished quality of service for individuals with disabilities – an issue which is at the center of ongoing enforcement efforts of the 2014 federal consent decree.

With some agencies losing more than 80 percent of new hires within six months, Antosh said, workers cite low pay and the complexity of the work as the chief reasons they leave. They must work two or three jobs simply to make ends meet, he said.

A growing body of research documents that a stable, high quality direct support staff produces positive results in the population it supports. Those benefits include “increased personal competence, increased employment, increased social networks and social capital and increased satisfaction with life,” Antosh wrote.

“A direct support workforce destabilized by low wages, limited opportunities for professional development and a lack of a career ladder results in instability and anxiety in the lives of the people they support,” Antosh said.

Those who depend on services have “decreased opportunities for community connection, decreased employment, and a general decrease in quality of service,” Antosh said.

Quality service, with access to community-based employment and non-work activities, are a key goal of the 2014 consent decree and a subsequent court order, which aim to enforce the 1999 Olmstead decision of the U.S. Supreme Court.

That ruling re-affirmed Title II of the Americans With Disabilities Act, which says that individuals with disabilities are entitled to receive services in the least restrictive environment that is therapeutically appropriate.The decision presumes that the community is the least restrictive environment. 

At right are submitted to the the Senate Finance Committee March 22 by the Community Provider Network of Rhode Island, a trade association of 25 private agencies that provide services to adults with developmental disabilities. In the graphic, DSP stands for "Direct Support Professional," the title given to front-line workers. The average hourly wage does not include raises enacted  that took effect July 1, 2016.  

One In Six DD Jobs in RI Goes Unfilled; Raises Would Ease Crisis and Improve Service Quality

image by capitol tv 

Kevin Nerney of the Rhode Island Developmental Disabilities Council, left, and Maureen Gaynor, second from right, share pleasantries just before their testimony before the House Finance Committee on Feb. 8. Looking on are Gaynor's support worker, Melanie Monti, and Emmanuel Falck of the Service Employees International Union State Council.  Image by RI Capitol TV. 

By Gina Macris

Raising the pay of Rhode Islanders who serve adults with developmental disabilities is not only about helping these poverty-level workers pay their bills, according to testimony before the House Finance Committee Feb. 8.

The proposed raises also will reduce staff turnover and, in turn, improve the quality of life for some of the state’s most vulnerable citizens, Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), told the legislators. 

Kerri Zanchi, the new director of the Division of Developmental Disabilities, agrees with Martin’s assessment. Zanchi says the pay hike is not only an “investment in the direct service professional, but an investment in our community" and in high quality services.  

She estimates that the wage increase will amount to an average of 42 cents an hour, and says that provider agencies are now experiencing a staff turnover rate of about 33 percent.

Carol Dorros, the mother of a 21-year-old man with behavioral issues and other complex problems, knows firsthand the value of support staff retention. When her son was still in high school and receiving some adult services from a private agency, his support worker changed four times during a single academic year. As a result, he made “no progress” from September to June, Dorros said.

 Maureen Gaynor rolled up to the speakers’ table in a power chair and used a computerized voice to speak the text she had written with a “headstick,” a pointer attached to a band around her head.

These people deserve higher pay, Gaynor said, explaining that support staff sometimes must help with the most intimate care, such as bathing, dressing and using the toilet.

And she reminded the legislators that she would not have been able to attend the hearing without an aide willing to drive her to the State House and get her to the basement hearing room.

After she spoke, Kevin Nerney of the Rhode Island Developmental Disabilities Council reinforced her remarks:  “When you help someone eat, drink or bathe, you need to have a really good relationship with that person. We’re not talking about folding shirts at the Gap or flipping burgers at McDonald's,” said Nerney.

At AccessPoint RI, a service provider, the starting salary is $10 an hour, or $22,000 a year, said the agency’s executive director, Tom Kane. The average pay was $10.82 an hour until the current fiscal year, when the General Assembly set aside $5 million for raises for developmental disability workers – the first pay increases since 2006, Kane said.

The added funding resulted in a 36-cent hourly increase, raising the average to $11.18, according to calculations made by service providers and others.

When Kane reviewed the the roster of employees at the time his agency processed the raises last fall, he said he was heartbroken to find a 30-year employee who was to receive a total of $13.10, with the pay bump.

Kane and others indicated they believe that a “15 in 5” campaign to raise the pay of direct care workers to $15 in five years (by July 1, 2021), is simply not enough.

Kane alluded to a drive launched by State Sen. Louis DiPalma, D-Middletown, last fall when he asked Governor Raimondo to include a raise for direct care workers in her budget proposal for the next fiscal year.. While she has done so, her $6.2 million set-aside for wages is about $$600,000 shy of what DiPalma requested.

Kane said raises should not only be based on a percentage increase.

 “A four or five percent increase on an insufficient wage is an insufficient increase,” he said.

If the minimum wage increases to $10.50 an hour, as Governor Raimondo has proposed, “and we give 5 percent” raises, Kane said, “we’re paying minimum wage again.”

Kane took issue with figures presented by Linda Haley of the House Fiscal Staff that the raises in the current budget also bumped up pay for supervisory personnel.

He said the raises all went to direct care workers, (as stipulated in current state budget.)  Some agencies, including AccessPoint, used other funding sources to provide raises or bonuses to supervisory employees.

At AccessPoint, Kane said, front-line supervisors spend half their time doing direct care anyway.

“It is incredibly important that this bill passes, hopefully with more money in it,” to support not only those providing direct care but people who perform other important tasks, like writing clients’ state-mandated individual support plans, which are akin to road maps for services that are specific to each client. Most of these employees “have not had a raise in 11 years,” he said. “I don’t know why they stay.”

Emmanuel Falck of the Service Employees International Union (SEIU) State Council represents 270 workers at the Arc of Blackstone Valley. One of them, a 52- year-old woman with 20 years’ experience in the field, used to be able to make ends meet by working 60 to 65 hours a week, he said.

But after an 18-month bout with cancer, the most she can now work is 20 hours a week. And the last vacation she had was three days in Washington, D.C., in 2000, Falck said.

He said the proposed 42-cent increase to the hourly rate would be much appreciated, but the state needs to move faster to raise workers’ pay to a living wage.

“I urge this committee to bump it up as fast as possible,” he said, proposing a $15 hourly wage by 2019 instead of 2021. As it is, direct support workers living in Rhode Island will be able to cross the state line to neighboring Massachusetts and do the same work for $15 an hour on July 1, 2018, Falck said.

Donna Martin, the CPNRI director, said that developmental disability service providers face a “tremendous crisis” in competing for the same pool of workers who serve elderly clients, thanks to a growing number of aging baby-boomers.

On average, the 27 providers belonging to CPNRI cannot fill one in six job openings, creating a vacancy rate of about 16 percent, she said. During exit interviews, workers say that they love their jobs but can’t feed their families with what they are paid, according to Martin.

As a result of the vacancies, employers are forced to spend money on overtime that they would rather put into worker pay and training, Martin said.

“I appreciate your sensitivity to the struggles of our staff,” Martin told the finance committee members.  “They are where the rubber meets the road when it comes to quality.”

Chris Semonelli of Middletown, the father of a 14-year-old girl with autism, put some historical context around the discussion of the wage proposal.

From 2006 through 2011, the budget for developmental disability services was reduced 20 percent, Semonelli said, quoting a profile of the system written by the Sherlock Center on Disabilities at Rhode Island College in 2013. And the services are not designed with an eye toward results. In the current design, more money gives more of the same service, he said.

That said, Semonelli said he strongly supports Governor Raimondo’s proposed wage increase in the next budget, as well as the “15 in 5” campaign. The governor’s plan for the next fiscal year “is a start,” said Semonelli, who also is co-director of an advocacy group called Friends of the Disabled on Aquidneck Island.

Although Wednesday’s hearing sounded like a budget discussion, it focused only on Article 23 – one of 24 chapters in the overall fiscal package Raimondo has submitted to the General Assembly.

The provision would require a one-time increase in the base pay of direct care workers, “in an amount to be determined by the appropriations process” and also require the Office of Management and Budget to perform an audit to ensure that the raises go only to those workers. 

Incentive Program for DD Service Providers Closer to Launch, But Lags Months Behind Court Deadline

By Gina Macris

Despite some progress, implementation still lags months behind schedule for a Rhode Island program intended to boost employment of adults with developmental disabilities.

Nor does the design of the program cover the full cost of staff training that is a prerequisite for participation, according to comments made at the monthly Employment First Task Force meeting Jan.10. The new employment supports program does reward private developmental disability service providers that already have trained staff at their own initiative.  

The General Assembly has allocated $6.8 million in the current budget for the incentive program to satisfy requirements of a 2014 federal consent decree requiring the state to boost its efforts to provide employment supports to adults with developmental disabilities.

Einloth                                                             photo by anne peters

But as the second half of the fiscal year gets underway, it appears that direct service providers have not yet been given the green light to bill for reimbursement under provisions of recently negotiated performance-based contracts, said Kim Einloth, a senior director at Perspectives Corporation.

A total of 19 contracts have been negotiated among 36 service providers operating in Rhode Island, a spokeswoman for the Executive Office of Health and Human Services said last week.

Despite an early morning snow storm Friday, Jan. 6, 18 agencies participated in a fair attended by some 40 special education high school students and another 40 young adults in the process of moving from school to adult life, according to the EOHHS spokeswoman. She anticipated the incentive program will serve about 200 adults with disabilities.

The incentive program was to have been in place Aug. 1, according to an order of the U.S. District Court.

Einloth said during the task force meeting that the director of the Community Provider Network of Rhode Island, Donna Martin, has conveyed her concerns about the program to the independent court monitor in the case, Charles Moseley.

Martin has not responded to requests for comment sent by email from Developmental Disability News.

At the task force meeting, Einloth and Kiernan O’Donnell of the Fogarty Center, another service provider, said that the program would pay a one-time bonus of up to $810 for each staff person trained to offer job-related supports, assuming that person serves ten clients.

O'Donnell          Photo by anne peters 

So-called “self-directed” families who design programs for a single individual would get only $81 to cover staff training, O’Donnell said. Neither figure fully supports an investment of 40 hours of class time and extra field work that is necessary for certification, he said, despite EOHHS assertions to the contrary. 

Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, said self-directed families were given four days in November to figure out whether they should apply for the program. The written materials explaining the program were so technical that parents didn’t understand them and set them aside, Rosenbaum has said. As part of her job, she has email contact with some of the self-directed families.

When the application process opened, in November, the state was unable to tell providers exactly how many bonuses they would receive under terms of the incentive program, according to Einloth, although that gap has been clarified.

According to the contracts, once staff are trained, agencies receive bonuses for completion of the course, and may bill at enhanced rates for employment-related services to new clients, Einloth and O’Donnell said in an interview after the task force meeting. .

But the billing must be done in 15-minute increments, they said, in the same fee-for-service reimbursement model that has been criticized by the U.S. Department of Justice and the court monitor as being inflexible.

Other features of the program pay one-time bonuses when clients get jobs and remain employed for 90 and 180 days. 

In the meantime, agencies do not receive enhanced rates for providing the same employment-related services to current clients – only new ones approved by the state as participants in the incentive program, O’Donnell and Einloth said. O’Donnell said agencies now routinely file appeals, one by one, to get better reimbursement for employment-related services for individual clients. O’Donnell said he understands most of those appeals are granted.

The new incentive program appears to draw attention away from the fact that reimbursement rates are too low across the board for providers to do their jobs, O’Donnell said.

He and Einloth also are co-presidents of the Rhode Island Association of People Supporting Employment First, a professional organization.

Meanwhile, a task force member with developmental disabilities, Andrew Whalen, told his colleagues that he had received a letter a day earlier, on Jan.9, notifying him he is eligible for services from BHDDH. Whalen applied nearly a year ago, after the death of his mother in January, 2016.

He first mentioned the long wait for a decision at last month's meeting of the task force, when the discussion touched on the state’s efforts to render speedy eligibility decisions and the effect of continuing human services computer problems on services for adults with developmental disabilities.

.In December, Whalen also said the new computer system – called UHIP – deleted a separate application for food stamps that he had filed. At the most recent task force meeting, he said his application was “on hold” because, thanks to his generosity of his sister, the balance in his checking account was too high. 

Kevin Nerney, chairman of the task force, said that Whalen could solve the problem by moving the excess money to an ABLE account. ABLE, which stands for Achieving a Better Life Experience, is a new type of savings account authorized by Congress and the General Assembly that allows individuals with disabilities to set aside money without compromising their Social Security or Medicaid benefits.

Nerney said ABLE began accepting applications from Rhode Islanders only in recent days at https://savewithable.com Paper applications will be available in March, he said.  

Toward a Smoother Transition: RI Will Decide Early, By Age 17, Who Will Qualify for Adult DD Services

By Gina Macris

(This article has been updated.) 

For some Rhode Islanders with developmental disabilities, the shift between high school and the adult world has been likened to falling off a cliff.

Now, changes are underway to lay the groundwork for a smoother transition from high school to adult living, the latest being a new policy that the state will accept applications from individuals aged 16 and will determine their eligibility by the time they turn 17.

But it remains to be seen how far the state gets in delivering on its promise to a federal court to find jobs for every eligible young adult who can and wants to work by next June 30.  

One potential problem is that, despite small raises recently granted to direct care workers, their employers still may not be able to hire the staff necessary to add new clients. 

New, slightly higher reimbursement rates to private service providers reflect the raises but do not address continuing shortfalls in overhead costs borne by employers, according to a spokeswoman for some two dozen agencies.

For years, private providers have had trouble recruiting and retaining competent staff. A new employment incentive program, with a few exceptions, requires agencies to use existing funding to train workers, if necessary, and make job placements before collecting one-time bonuses. 

According to evidence presented in U.S. District Court last April, young adults with developmental disabilities have been dismissed abruptly from high school on their 21st birthdays and have tended to sit at home for weeks or months because adult services were not in place.

Rhode Island law says individuals with developmental disabilities are eligible for adult services at age 18, although decisions on eligibility often have been made a few months before the young people turned 21.

With many agencies declining to accept new clients, families found it difficult and time-consuming to arrange services.

When services finally were pulled together, they often fell short of participants’ and families’ expectations, according to what U.S. District Court Judge John J. McConnell heard in April.

Since the April hearing, the General Assembly has enacted a law sponsored by the Senate Finance Committee chairman, Daniel DaPonte, that requires school districts to keep those 21-year-olds in class until the end of the academic year.

More recently, the Executive Office of Human Services (EOHHS) has updated plans to better identify, enroll, and serve young adults eligible for developmental disability services provided by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Office of Rehabilitation Services (ORS). Those plans include the new “eligibility determination by 17” policy.

In a dramatic departure from past practice, parents of youngsters who are likely to be eligible will be encouraged to apply for adult services when their sons and daughters turn 16.

Consent Decree Drives Change

The changes respond to requirements of a 2014 federal consent decree which aims to move adults with developmental disabilities out of sheltered workshops and segregated day programs that violate the Olmstead decision of the U.S. Supreme Court.

In 1999, the high court found that services for individuals with disabilities must be provided in the least restrictive environment that is therapeutically appropriate, with that environment presumed to be the community.

During the latest judicial review of the consent decree in September, an independent court monitor, Charles Moseley, noted that since the consent decree went into effect in April, 2014, the state has failed to meet targets for placing young adults in regular jobs in the community, with the necessary supports. 

By July 1, 2016, the state was required to have placed all young adults who have left high school during the 2013-2014 academic year or later. At the time, 151 people were reported to be eligible, but the state’s total number of placements was 29.

Rather than hold a contempt hearing against the state, Judge McConnell has deferred to Moseley, who said was confident he could work with state officials to meet the employment goals.

Complicating the issue, the number of young adults in question has risen since July from 151 to 259. The Rhode Island Department of Education (RIDE) has updated its count of individuals with developmental disabilities who left school during the 2015-2016 school year and will continue to do so through June 30, 2017.

RIDE also has promised to expand the categories of individuals whose names it reports to BHDDH to more accurately reflect the total population of young people likely protected by the consent decree, according to Moseley’s most recent report to Judge McConnell Nov. 1.

Since the consent decree went into effect in 2014, RIDE has reported to BHDDH only the names of those with developmental disabilities who turn 21 and leave school.

Going forward, its count will include all those between the ages of 14 and 21 who have developmental disabilities, autism, or multiple disabilities that can be expected to restrict their ability to function independently as adults. The monitor wants RIDE to identify all those students by Nov. 15.

In the meantime, BHDDH, ORS, and RIDE will work together to notify all affected families of their protected status under terms of the consent decree and give them information about applying for services. (Click here for eligibility criteria in state law.) 

General Assembly Increased DD Budget

To shore up the state’s ability to provide services once adults are found eligible, the General Assembly has approved an hourly wage increase of 36 cents for direct care workers – a total of $5 million – and allocated another $6.8 million to foster supported employment.

In addition RI Senate leaders have said they want to raise the current average wage of front line workers from $11.18 to $15 an hour over five years.

But the state still faces continuing consent decree deadlines for placing adults with developmental disabilities in jobs, including about 50 former sheltered workshop employees by Jan. 1, as well as a yet-to-be–determined number of eligible young adults by June 30.  

The new $6.8 million supported employment program expects to begin disbursing funds in mid-November, according to an EOHHS document attached to Moseley’s latest filing with the court.

The program requires providers to have specially-trained employment teams in place to quality for the program and begin receiving a series of one-time bonuses. The bonuses reward the certification of employment specialists, job placements, and job retention for six months with totals that vary from about $3,500 to $15,750 per person, depending on the client’s age and the complexity of the disability.

The recent wage increases

The recent wage increases cover payroll–related taxes but do not add to the state’s reimbursement to private agencies for other aspects of employee overhead costs-taxes. Nor do the raises increase the pay of front-line supervisors or mid-level managers, according to Donna Martin., executive director of the Community Provider Network of Rhode Island, an association of 26 agencies.

Martin says the state allows agencies  35 percent of direct care workers’ salaries for such overhead costs, but CPNRI data “shows actual employee-related expense is in excess of 60 percent.”

Last spring, she told the General Assembly that her membership operates at an average loss of $5,500 a year for each employee.

do not change state’s reimbursement to private agencies for employer-related taxes and other costs, according to Donna Martin, executive director of the Community Provider Network of Rhode Island, an association of 26 agencies.

Last spring, she told the General Assembly that her membership operates at an average loss of $5,500 for each employee.

Because many agencies are not expanding their staff or accepting new clients, the parents of newly-eligible young adults increasingly are turning to so-called “self-directed” services, which allow them to design customized programs for their sons and daughters, a time-consuming process. The parents are responsible for organizing a program within their budget and choosing and supervising workers. A fiscal intermediary pays the bills.

BHDDH is encouraging these “self-directed” providers, as well as the established agencies, to apply for the one-time supported employment bonuses.  

The next opportunity for consumers and families to speak to state officials about the consent decree and developmental disability services in general is Wednesday, Nov.9 from 4 to 6 p.m at the Cherry Hill Manor Nursing and Rehab Center, 2 Cherry Hill Rd., Johnston.  

Judge McConnell has scheduled his next review of the consent decree for January 27 in U.S. District Court, Providence.

(The original version of this article inaccurately stated that recent raises to direct care workers did not include an increase for any aspect of employer-related costs.)  

RI Puts Maher Center in Newport on Probation; Agency Files Appeal to Regain Full DD License

Steven and Jo-Ann DiBiasio's Daughter Plays the  Piano at Home in Cranston                                                                                                                          Photo by Anne Peters 

By Gina Macris

She was so excited about the prospect of attending a carnival on Easton’s Beach in Newport that she could not sleep, but hers was no ordinary insomnia.

The young woman, in the care of the James L. Maher Center of Newport, a developmental disability service agency, has a complex array of challenges on the autism spectrum and a rare chromosomal disorder.

Taken together, they give her a propensity for getting “stuck” on a single idea, unable to shift gears unless someone intervenes with a distraction in a light-hearted way. If her fixation goes uninterrupted, she can dissolve into a swirl of frustration, fear and anger.

That’s exactly what happened early on the morning of May 3. Police dispatched a cruiser to the group home where she lived, at 228 Carroll Ave., for a report of an “out of control 24-year-old female.”

She was taken away in the back of the police car to the emergency room of Newport Hospital. The Maher Center abandoned her there, “effectively leaving her homeless,” according to a recently concluded investigation by Rhode Island’s developmental disability agency.

As a result of 16 adverse findings connected with the woman’s care, the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) recently downgraded the Maher Center’s license to “conditional,” putting the agency under heightened oversight for a six-month probationary period, according to Jennifer Wood. The decision was conveyed to the agency in a letter dated Sept. 14. 

Jennifer Wood, Rhode Island’s Deputy Secretary of Health and Human Services, says BHDDH will conduct another evaluation in six months to determine whether the full license should be restored, continued for another six-month probationary period, or terminated.

William Maraziti, CEO of the Maher Center, said by telephone that the agency disagrees with most of the findings in the BHDDH investigation but declined substantive comment.

The Maher Center, which serves about 300 families in Newport and Bristol Counties, has appealed the decision. The state’s heightened monitoring of the agency will continue during the appeal, according to a spokeswoman for Wood.

May 3 marked the sixth time in the previous nine months that the young woman had been taken to the hospital for behavioral issues.

After the third hospitalization, at the end of October, 2015, the Maher Center gave notice that it wanted to terminate services. However, the agency had an obligation to work with the client indefinitely until a new provider could be found, according to state regulations. 

The woman, now 25, is the daughter of Steven and Jo-Ann DiBiasio of Cranston. She is one of three girls the couple originally took in as foster children and later adopted. The DiBiasios asked that their daughter not be identified by name to protect her privacy. 

 DiBiasio       Photo by Anne Peters  

In what Steven DiBiasio describes as the “tsunami” that occurred May 3, he and his wife learned that police had taken their daughter to the emergency room during a surprise call from a hospital official, who had been trying to reach the group home and had dialed their Cranston telephone number by accident.

He said he and his wife dropped everything and drove to Newport. DiBiasio said he learned that no one from the group home had accompanied his daughter to the hospital. Later, he said, he received a call from a Maher Center employee, who said the group home would not take his daughter back.

Nor did she have the favorite things that brought her comfort, including a Minnie Mouse doll she asked for repeatedly while the family waited at the hospital for a 2 p.m. appointment with the young woman’s psychiatrist, DiBiasio said.

Before the family left Newport that day, DiBiasio said he picked up his daughter's Minnie Mouse and a few of her other belongings at the Maher Center’s administrative offices on Hillside Avenue.

He said he saw her bags on the floor in an office and picked them up. but a Maher Center employee also grabbed them. Maraziti, the Maher Center executive director, came out of his office and asked the employee to let go, according to DiBiasio. 

Maraziti also called police to report an assault by the “parent of former client,” but police brought no charges, according to the police report.

The DiBiasios took her home to Cranston, where she has lived ever since. The first night she was home, she slept in her parents’ bed, clinging to her mother, something she had never done.

After she returned to Cranston, her daughter was aggressive, a tendancy that was not apparent before she went to live in the Newport group home in the summer of 2014, Jo-Ann DiBiasio said. 

Chronic sleep deprivation has once again become a way of life for the DiBiasios, both of whom have health problems that make it difficult for them to keep up physically with a young adult who needs constant supervision.

Jo-Ann DiBiasio Photo by Anne Peters

 For the first two months, the young woman received no developmental disability services.  Jo-Ann DiBiasio took an unpaid leave from her job during that time to make up for the lack of support and to put extra effort into behavior management techniques to decrease her daughter’s anxiety and anger.

In July, the young woman started getting daytime support services from a new agency, DiBiasio said, but there are no residential prospects on the horizon. 

 The investigatory arm of BHDDH started looking into the case the day after the woman’s parents took her home from Newport Hospital, when the quality improvement unit received a complaint of a human rights violation.

The investigators’ report was signed by Eileen Marino,  Associate Administrator of the Office of Quality Improvement.

The findings demonstrated that the Maher Center is “not reliably following the rules and regulations” of the Division of Developmental Disabilities, Wood said.

Even though the case involves the experience of just one client, the investigation raises “systemic issues” about the quality of care and respect for human rights, Wood said.

Another woman who lives at the same group home told BHDDH investigators that staff “put her down,” that an employee yelled at her in front of housemates, and that no action was taken when she told the house manager about the incident.

In the case of the DiBiasios’ daughter, the investigators found that the group home staff failed to follow proper de-escalation techniques spelled out in a 14-page behavioral support plan – a script of strategies intended to help the young woman keep herself on an even emotional keel.

The staff also failed to follow proper procedures for administering medication on an "as needed" basis, according to the findings.

If the behavioral and medication procedures had been followed, the investigators concluded, the ensuing incident might have been avoided.

According to the BHDDH findings, the staff of the group home simply told the young woman to go back to bed when she became agitated in the middle of the night.

In the next few hours, she was given an anti-depressant and she also was restrained, according to the BHDDH report. It said the group home staff called 911 at 7:37 a.m. The findings did not say whether or not the restraint was warranted, but investigators did say it was not properly recorded. 

The investigators found numerous violations of state regulations, some of them procedural, such as:

•       The Maher Center failed to provide the reason for its decision to cut off services to the young woman.

•       The agency failed to provide the young woman and family with information about their right to appeal the decision.

•       The Maher Center failed to work with the client and family to keep services going on an ad-hoc basis until a new provider could be found, so that there would be no interruption of services.

 •      The Maher Center failed to respond to an investigator's request for a copy of its policy regarding situations in which clients are taken to the hospital. 

The DiBiasios’ struggle to find 24-hour support for their daughter played out during a long-running fiscal drought in developmental disability services that continues today, despite an $11-million-increase in the current budget for daytime programs.  

 In July, 2012, the young woman marked her 21st birthday and the end of high school special education.  She experienced a “tremendous drop” in the frequency and variety of activities through adult services available from BHDDH and she became severely depressed, Steven DiBiasio said.

Six months later, in December, she dialed 911 herself and ended up at Butler Hospital.

All her caregivers at the time concurred that she needed 24-hour care, according to DiBiasio.

In March, 2013, officials identified the Carroll Avenue home in Newport, located just a few steps from the fabled Ocean Drive. But it was more than a year and a half, on Aug. 1, 2014, before the young woman was able to move in.

In all that time not one other agency operating group homes in Rhode Island offered to take the DiBiasios’ daughter. 

Some providers are known for their expertise in autism, but almost all agencies in Rhode Island have closed their doors to new clients, saying they operate at a loss for each staff member they must hire.

The issue of the providers' capacity to take on new clients surfaced briefly, without reference to any particular family, at a recent statewide meeting of community-based organizations focused on developmental disability services. 

Donna Martin, executive director of the Community Provider Network of Rhode Island , said “a lot of organizations are saying they don’t have the capacity to provide community-based services.”

“A lot of people are conflicted”  between a desire to serve the needs of the newcomers and “the commitment to people they’ve had for many years,” she said.

CPNRI has 23 member agencies which serve about 3500 individuals, most of the adult population with developmental disabilities in Rhode Island.

Before their daughter went to live in the group home at 228 Carroll Ave., the DiBiasios said, they were told the Maher Center planned to develop an expertise in serving individuals with autism, and that their daughter would be the first client in that new program.

While the young woman had been waiting to move to Newport, her parents took her out frequently to movies, bowling, restaurants, and other activities which she enjoyed.With support, she became a volunteer “play partner” at the children’s play and exploration area of Roger Williams Park Zoo, Steven DiBiasio said.

The DiBiasios said they told the Maher Center that they wanted the visits to the zoo to continue, along with other community-based daytime activities.

When they were told that transportation from Newport to the zoo in Providence might be an issue, Steven DiBiasio donated a 2004 Toyota Corolla to the Maher Center so that the transportation barrier would be removed.  BHDDH has ordered the car to be returned to the DiBiasios.

Both Jo-Ann and Steven DiBiasio said they fervently wanted the placement to work.

228 Carroll Ave., Newport                                                Photo By Brian C. Jones 

Within six months after their daughter moved to Newport, the DiBiasios say, they were informed that the Maher Center had abandoned plans for the autism program.

BHDDH authorized funding for two staff members to devote their full attention to the young woman, beginning in October, 2015, but investigators found the Maher Center did not utilize the money. 

Steven DiBiasio said his daughter spent most of her daytime hours in the Maher Center’s day program and the rest of her time at the group home, largely shut off from the sights that had attracted her to Newport in the first place.

DiBiasio said the visits to the zoo were far and few between and eventually stopped, for reasons he was told ranged from“lack of adequately trained staff to the client’s unsafe behavior,” according to a letter of complaint he sent former BHDDH Director Maria Montanaro in late April, about a week before the incident on May 3.

Investigators faulted the Maher Center for failing to provide adequate staffing, “resulting in her inability to access the community,” including the zoo, as outlined in her individual support plan.These plans form the bedrock of supports tailored to individualized state funding.

BHDDH also said the agency failed to adequately communicate with the parents, who are the woman’s guardians.

Over time, the DiBiasios became concerned about the amount of prescribed medication administered to their daughter, particularly in light of her genetic disorder, a duplication of chromosome 15, which can make it difficult for her liver to tolerate too many drugs.

In March, 2016, Jo-Ann DiBiasio wrote the Maher Center nurse, saying that her daughter “is no longer able to talk to me on the phone

the way she had in the past. She is constantly yawning and obsessing” about the things she used to do with her family, the mother wrote.

When she asked her daughter about her day, the young woman replied that she didn’t like the prescription medication she was given on an “as-needed” basis.

The mother asked the nurse for complete information on the times and doses of the medications since December, 2015, when a psychiatrist authorized their use on an as-needed basis.

The agency responded to the email but did not answer the questions, according to investigators.  As a guardian, Jo-Ann DiBiasio has a legal right to her daughter’s medical records.

Today, the young woman takes less medication on a daily basis than she did when she was living at the Maher Center group home, Steven DiBiasio said. In the four months since she moved back into her parents' home, she has had no emergency visits to the hospital, he said.  

For ninety minutes twice each week, accompanied by support staff, she volunteers at a child care center. There have been no incidents, he said.   

On a recent Saturday in Cranston, the DiBiasios’ daughter took a visitor by the hand into her house and offered a seat, as if she were leading a a guided tour. She asked her guest a number of questions about herself and her car, and inspected the newcomer’s car keys.                         

The questions allow her to process information in a way that decreases anxiety, Steven DiBiasio explained.

At the kitchen table, the young woman played with a laminated word-and-picture puzzle that had her distinguish the difference between a question and a statement. 

The laminated poster board was fixed with velcro to receive one punctuation mark or another to complete a particular sentence. It is just one of the materials Jo-Ann DiBiasio has created to help her daughter with communication.

When she needed to move on to something else, her parents and two sisters helped her find a new activity, while one of the family dogs followed and the cat lounged on a high perch, taking it all in.

After a while, the young woman, who has perfect pitch, gave a brief demonstration of her skills on the piano and guitar.

When the talk turned to Newport, she said she still misses the excitement of the City-By-The-Sea.

(An earlier version of this article incorrectly said that DiBiasio retrieved none of his daughter's belongings from the administrative offices of the Maher Center on May 3.) 

Bigger DD Budget Appears "Safe", Families Upset by Lack of Funding and Services

Photo by Anne Peters

Donna Martin, Executive Director of the Community Network of Rhode island, left; and Kevin Nerney, Chairman of the Employment First Task Force, right. 

By Gina Macris

Despite positive signals about more state funding for developmental disability services in Rhode Island, members of the Employment First Task Force acknowledged May 10 that in general, families remain angry and upset with officials of the state’s primary service agency, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Task Force members who keep tabs on developmental disability issues on the General Assembly’s legislative agenda said that Governor Gina Raimondo’s plan for increased funding appears to be safe as the legislature approaches the final three or four weeks of its session.

Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), said she heard recently that more legislators  grasp the idea that “the consent decree is something they need to pay attention to,” even if they don’t understand all the details.

“That’s good to hear,“ said Charles Moseley, assigned to monitor the state’s implementation of a 2014 consent decree between the state and the U.S. Department of Justice. In the consent decree, the state agreed to reorganize daytime services for the developmental disabled to focus on community-based jobs and other activities to comply with the integration mandate of Title II of the Americans With Disabilities Act. (ADA)

U.S. District Court Judge John J. McConnell, Jr. has promised “swift and dramatic” action if the General Assembly does not provide sufficient funding to meet the immediate requirements of the decree.

At Tuesday’s task force meeting, informal updates on other disability-related topics suggested that, in general, families apparently are not yet realizing benefits of the consent decree, now at the start of the third year of its ten-year span.

There is widespread dissatisfaction among families about issues that reflect chronic underfunding, complicated by a lack of communication or miscommunication from the state, according to the tenor of comments shared at the meeting.

Kevin Nerney, chairman of the task force, expressed concern about individuals with developmental disabilities who had difficulty finding suitable services and had received letters from BHDDH saying they had been cut from the rolls because they hadn’t used their allocations.

Photo by Anne Peters 

Some of the concerns go back more than two years. Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities, (right) said she understood from informal conversations with BHDDH officials that about 400 individuals had received such letters as of February, 2014.  In the fall of 2015, when the topic was revisited by the Rhode Island Developmental Disabilities Council, a BHDDH official said another 50 individuals had been sent similar letters.

Rosenbaum said after Tuesday’s meeting that she understood BHDDH social workers tried to reconnect with individuals who they knew had been looking unsuccessfully for services.  The task force did not have more recent information on how many of those removed from the BHDDH client roster may have been reinstated.

Efforts to get additional information from BHDDH were unsuccessful Wednesday.

About two dozen private agencies providing most of the supports in Rhode Island to individuals with intellectual or developmental disabilities are operating at a loss and routinely tell prospective clients their programs are full.

Rosenbaum also said young adults eligible for BHDDH services are continuing to leave school and sit at home for months at a time because suitable adult programs are unavailable.

Although a spokeswoman for the state has said eligibility for adult services begins at age 18, Rosenbaum reiterated that, in actuality, BHDDH does not determine eligibility until about four to five months before applicants leave school or turn 21, leaving insufficient time to arrange services.  

In many cases, school departments provide services for intellectually and physically disabled students until they turn 21. Even so, under provisions of Rhode Island law, students with intellectual disabilities are eligible for adult services at the age of 18. Until students leave high school,  the consent decree envisions adult services as supplementary, such as facilitating and supporting vocational assessments and employment experiences, or actual part-time or summer job placements.

In addition, the adult service system would pay for the time of social workers and other professionals to help students and their families formulate individualized adult programs and find service providers.

 (BHDDH is in the process of negotiating a contract with the Rhode Island Parent Information Network to provide support to some young adults and their families who are grappling with transition issues, according to RIPIN’s representative on the Task Force, Sue Donovan.)

Rosenbaum, meanwhile, has filed a statement with U.S. District Court describing the problem, which figured in testimony in an April 8 evidentiary hearing before Judge McConnell. McConnell is poised to consider a request for corrective action to implement the consent decree. The request has not yet been filed.

While BHDDH officials insist there have been improvements in an interview procedure connected with periodic reviews of individual funding levels, Mary Beth Cournoyer, (below), a parent representative on the Task Force, said those assertions are not borne out by an informal survey she did of parents and others familiar with the process.

Photo by Anne Peters

Cournoyer said that she knows interviewers have been told “not to badger parents” by challenging the answers they give about their son’s or daughter’s needs.

Nevertheless, the interviewers continue to do so, said Cournoyer,

She said she has heard enough to recognize a pattern of argumentative interviews followed by reduced funding levels.

Others have complained about the so-called Supports Intensity Scale (SIS) interview and the associated funding decisions,  most recently at a “town hall” meeting April 27. There, the mere mention of the “SIS” by a BHDDH official triggered a round of laughter in an audience of about 100 people, mostly family members.

On that day, Charles Williams, director of the BHDDH Division of Disabilities, told parents to file an appeal if they disagree with the SIS results. Almost all, if not all, appeals are granted, he said.  

The SIS interview, based on a set of standard multiple choice questions, was designed by the American Association of Intellectual and Developmental Disabilities to gauge the supports or services needed to help an individual achieve his or her goals.

It does not take into account the risk of removing those supports.

The DOJ has found that that BHDDH has used the SIS to determine funding levels, and the consent decree prohibits the continuation of that practice.

The Employment First Task Force, required by a provision of the consent decree, is a group representing community agencies, individuals with disabilities and their families. Among other things, it was intended to serve as a bridge between state government and the public.

But public reaction to the consent decree, most prominently the backlash at the recent “town hall” meeting, has led Nerney, its chairman, to question the role of the task force as a filter for communications from the state.  

He said there hasn’t been an open line of communication with the state in the past, and he told the DOJ that “I don’t think this group should be a funnel.” Expanding on this point, Nerney said the real need is for “actual participation” in the plans that emerge from the state to comply with the consent decree.

“When BHDDH develops a plan, they should have stakeholders at the table,” he said. The more participants at the table, the more stakeholders there will be in the outcome, he said.

Others agreed. “Everybody wins when we strategize and work together,” said Kim Einloth, senior director at Perspectives Corporation, a private service provider.

Tom Kane, CEO of Access Point RI, another service provider, said he would like to have a plan “shared with everybody and shaped by everybody.”

 “We would like to have the ability to anticipate so we can pass information along as well. I, for one, am tired of being reactive,” he said. 

Court to Hear Evidence Friday on RI Compliance with Olmstead Decree

By Gina Macris

The state of Rhode Island says it is in “substantial compliance” with a 2014 consent decree  mandating a decade-long transformation of services for people with developmental disabilities to conform with the Americans With Disabilities Act.

That assertion, made in a compliance report filed April 1 in U.S. District Court, will face close scrutiny in an evidentiary hearing scheduled for April 8 before Judge John J. McConnell, Jr.

The judge also has in hand a recent report from the court monitor in the case, Charles Moseley, that expresses doubts about the state’s ability to meet employment targets in the decree or sustain them over time. The decree remains in effect until Jan 1, 2024.

Other filings submitted this week say the state developmental disabilities agency delays services until young people reach the age of 21 – or later – in violation of state law.

One of the statements also says there is a dearth of job development services available to individuals with disabilities, because the state does not fund these supports. Instead, the state expects service providers to shift money from other funding categories to pay for job development.

In a joint motion filed March 1, Moseley and lawyers for both the state and the U.S. Department of Justice identified three issues that could stand in the way of full compliance: a lack funding, too few placements in community-based employment and other integrated activities, and insufficient leadership necessary to fulfill the requirements of the consent decree.

A month later, the state’s report says it has:  

•   Put the necessary interdepartmental leadership in place, at an annual cost of $591,244.

•   Exceeded current targets for supported employment.

•  Has remained “fully committed to providing sufficient funding to effectuate the goals and targets in the consent decree.” The report cites millions of dollars spent since 2014 and proposed by Governor Raimondo in budgets submitted for General Assembly approval for the remainder of this fiscal year and for the next year.

The state identified more than 3,000 adults in segregated programs and secondary-school special education students who are currently covered by the decree.

In terms of employment goals, the decree requires relatively modest targets, starting with perhaps 150 new jobs a year, depending on how many of the job seekers are eligible high school students in a particular graduating class.

At its heart, the agreement requires the state to fundamentally transform its approach to daytime services for adults with developmental disabilities, and to show exactly where it is putting its money. Most of the population affected by the consent decree has worked in sheltered workshops or stayed in segregated day programs in violation of the 1999 Olmstead decision of the U.S. Supreme Court, which affirmed the right of people with disabilities live and work in their communities under Title II of the ADA.  

Among the key budget items the state cited in its April 1 report is a proposed $5 million increase for the wages of private agency staff during the next fiscal year; it would hike workers’ pay by about 45 cents an hour.

The “Enhanced Payments Direct Care Staff” would provide financial incentives to providers who commit to achieve targets for placing people with developmental disabilities in jobs according to timelines that satisfy the consent decree, according to the state’s report. 

The labor force working directly with people who have intellectual challenges makes an average of about $11.55 an hour, according to a spokeswoman for the Community Provider Network of Rhode Island, which represents 23 private agencies that provide most of the services in Rhode Island.

Agencies operate at a loss for each worker they employ, because the state does not reimburse them for the full cost of employer-related taxes and other benefits, according to the spokeswoman, Donna Martin, who was interviewed about Governor Gina Raimondo’s budget proposal in February.  The $5 million proposal does not contain a provision for employer-related costs.

DD System Under Financial Strain

BHDDH director Maria Montanaro, meanwhile, has acknowledged that past cuts in reimbursement rates have left the private provider system “fragile,” according to a Providence Journal report on her testimony before the House Finance Committee in early January. 

Providers report that the cuts have forced them to reduce wages, resulting in lower quality applicants and high turnover.

In a court order spelling out the parameters for the April 1 report, McConnell asked for evidence that the state is implementing performance-based contracts for community services, in conjunction with a “flexible reimbursement model” that includes incentives to service providers for placing clients in jobs. 

The state’s report does not mention a flexible reimbursement model.

The consent decree requires that the state “ensure that its reimbursement model for day activity services is sufficiently flexible to allow providers to be reimbursed for costs” directly related to supporting integrated employment, including those that are carried out “when service provider staff is not face-to-face with a client.”

The decree goes so far as to cite specific reimbursable activities, including negotiating with employers and counseling clients by telephone, which are not covered by the current system.

Currently, BHDDH reimburses private agencies for daytime services according to the amount of time each worker spends with a client. The time must be documented for each client and worker in 15-minute increments. Agencies are not reimbursed when clients are absent, for whatever reason. Unless a client has 100 percent attendance, the agency cannot collect the full amount of funding that BHDDH authorizes for each person on an annual basis.

In response to McConnell’s request for information on performance-based contracts, the state’s report says those are still in the planning stages in all agencies governed by the state’s Executive Office of Human Services, including BHDDH. The report indicated BHDDH would have performance-based contracts in place with service providers during the next fiscal year.  The consent decree says performance-based contracts were to have implemented by Jan. 1, 2015.

Consent Decree Requires its Own Budget

The 2014 agreement between the state and the Justice Department requires that the state maintain a budget that can track the amount spent on consent decree compliance that is distinct from general expenditures on behalf of adults and adolescents with developmental disabilities.

Besides the planned $5 million in wage increases, the state’s compliance report cites another $1,870,474 in enhanced services targeted for a total of 75 individuals who would move to supported employment from a sheltered workshop or a segregated day program during the next fiscal year.

McConnell had asked the state for individualized funding information and other information that “follows the person” as each of the individuals under the jurisdiction of the consent decree makes the transition from a sheltered workshop to community-based employment or integrated day services.

So that the court, the monitor, and lawyers for both sides can track specific individuals’ progress over time while protecting their privacy, McConnell said that each person should be identified by a letter code that blocks personally identifiable information.

The state did not submit any information that could be tracked on an individual level, but its report says that it has contracted with the Sherlock Center on Disabilities at Rhode Island College to reconfigure an existing “Employment and Day Supports Survey” to accomplish that goal.

Beginning in June, the Sherlock Center will conduct the survey quarterly, providing all the requested data and enabling “ongoing measurement of targets related to the consent decree at the individual level,” according to the report.

BHDDH already has a $675,000 contract with the Sherlock Center to provide technical expertise and guidance to private agencies converting from segregated programs to community-based day services in a so-called “Conversion Institute” required by the consent decree. Governor Raimondo would keep that level of funding for the Conversion Institute in her budget proposal for the next fiscal year.

The state is “working systematically” with Sherlock Center on the Conversion Institute, as well as with direct support agencies, “to entirely transform the delivery system” for supported employment and integrated day services in Rhode Island, according to the report.

The state’s report identifies a total of 3,076 individuals with intellectual or developmental disabilities under the purview of the consent decree, including 99 who left high school in the 2013-2014 and 2014-2015 academic years.

The consent decree requires integrated employment for 75 adults formerly in sheltered workshops or segregated day programs by Jan. 1, 2016, and the state ’s report counted 101 who had met that goal.

Another of the decree’s requirements is that all of the 99 students who left high school in the past two years were to have jobs by July 1, 2015, but as of April 1, the state had identified 37 in that category who have work.  

Moseley, the monitor, told the judge in his most recent report report that his conversations with private providers and with BHDDH staff indicate that the agencies are not receiving any extra support to place people in jobs and may not be able to keep up the current pace.

Other Consent Decree-Related Funding

The state’s April 1 submission enumerates other consent decree expenditures, from July 1, 2014 through the end of the next fiscal year, June 30, 2017, at the three agencies responsible for implementation: BHDDH, the Rhode Island Department of Education (RIDE) and the Office of Rehabilitation Services of the Department of Human Services (ORS.)

The categories and amounts are:

• $800,000 in each of the current and previous fiscal years for a consent decree “trust fund” to help direct service agencies with start-up costs for converting from sheltered workshop operations and segregated day programs to community-based supports.

• $244,260 to the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and its State Employment Leadership Network (SELN) for guidance and technical assistance in transforming the state’s system of services. The SELN is a partnership between the NASDDS and Institute of Community Inclusion at the University of Massachusetts Boston.

• ·A tripling of the ORS budget for services to individuals with developmental disabilities, from $884,370 in the first fiscal year of the consent decree (July 1, 2014 to June 30, 2015)  to a projected $2,603,374 in the next fiscal year.

•  More than $300,000 a year, through the next fiscal year, budgeted by RIDE for personnel and contracts to help implement the consent decree, in addition to supports provided by individual school districts to transition-aged special education students.

• A total of $591,244 for new leadership positions focused on implementation of the consent decree: a consent decree coordinator, a chief transformation specialist, an employment specialist and a program development director.

Moving to Fill Leadership Gap

The most critical of the posts is that of the consent decree coordinator, Mary Madden, whose position gives her authority to bring about cooperation among BHDDH, ORS, and RIDE in implementing the consent decree, according to the report.

As recently as December, Moseley and lawyers for the DOJ had expressed concerns that the coordinator’s position, subordinate to BHDDH director Montanaro, did not have enough clout and that leadership was foundering. 

Since then, Madden has been appointed as the coordinator on a permanent basis and reports directly to the Secretary of the Executive Office of Health and Human Services, Elizabeth Roberts, “with the full authority of the Secretary and the Governor,” according to the report.

“The Secretary of Health and Human Services, the deputy secretaries and each of the directors of the state agencies are personally involved in monitoring consent decree implementation” and are briefed regularly by Madden and by their representatives on an “Interagency Consent Decree Team,” the report said.