RI Senate Would Require Governor's Workforce Board to Plan Jobs for Disabled

By Gina Macris

The Governor’s Workforce Board in Rhode Island would be required to include individuals with intellectual and developmental disabilities in its initiatives, policies and actions involving workforce development, under provisions of a bill that has passed the Senate.                                 

The legislation (2016-S 2476), introduced by Sen. William J. Conley, Jr., (D-East Providence and Pawtucket) also would add representatives of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals to the Career Pathways Advisory Committee of the Governor’s Workforce Board.

Similar legislation (2016-H 8035) has been introduced in the Rhode Island House by Rep. Gregg Amore (D-East Providence). 

“This is an opportunity for us to transform our workforce systems in a planned fashion to transition adults with intellectual or developmental disabilities into community-integrated settings,” Conley said in a statement.  

In the last six months, the U.S. Department of Justice and an independent court monitor have  turned to the U.S. District Court for assistance in enforcing terms of a two-year-old consent decree in which Rhode Island agreed to stop violating Title II of the Americans with Disabilities Act by phasing out sheltered workshops that paid subminimum wages to adults with disabilities. 

In place of segregated employment and day programs, the state agreed to help people with intellectual and developmental disabilities find and keep jobs in the community and participate in integrated non-work activities. 

Title II of the ADA, underscored by the so-called Olmstead decision of the U.S. Supreme Court in 1999,  in essence says that individuals with developmental disabilities have a right to live, work, and play in their communities, just like anyone else. 

“This bill affords individuals with disabilities the same access to job training and career opportunities as all other Rhode Islanders,” Conley said, acknowledging that the state “has done little to help the developmentally disabled find gainful employment.” 

The Governor’s Workforce Board is the primary policy-making body for workforce development issues in Rhode Island, with authority to allocate state Job Development Funds and federaltraining funds under provisions of Title I-B of the federal Workforce Investment Act.

Montanaro to Meet with Families and Individuals with Developmental Disabilities

By Gina Macris 

Rhode Islanders with intellectual or developmental disabilities and their family members will have a chance to speak with Maria Montanaro, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals Wednesday, April 27, from 4 to 6 p.m. at the Buttonwoods Community Center, 3027 West Shore Rd., Warwick. 

The session will be the third such community meeting for Montanaro, who was appointed to the position by Governor Gina Raimondo in January, 2015. 

 Montanaro is expected to take questions from the audience and to discuss reforms underway in the division of developmental disabilities, one of the state agencies under federal oversight until Jan. 1, 2024, in connection with the way it delivers daytime supports to adults receiving its services. 

The division is gearing up for a shift from group home residential care to shared living arrangements with individual families throughout the state.  The move, intended to add 300 adults to shared living arrangements by June 30, 2017, would free up millions of dollars that would be reinvested in supported employment services and other integrated activities as required by a 2014 statewide consent decree with the U.S. Department of Justice. 

There are now roughly 1300 people with intellectual or developmental disabilities living in group homes in Rhode Island. At the end of March, there were 288 individuals in shared living arrangements, an increase of 10 during that month, according to the most recent figures publicly available.

For directions to the Buttonwoods Community Center, click here. 

DD Budget Plan Scales Back Shared Living Expansion in Rhode Island

Hearing Highlights Two Systems of Care

By Gina Macris

Rhode Island’s developmental disabilities agency has sharply scaled back plans to move residents of group homes to less-expensive shared living arrangements, a strategy to free state money for measures required in a 2014 consent decree to remedy violations of the Americans With Disabilities Act. 

That information emerged at a RI House Finance subcommittee hearing Tuesday, April 12 on the budget of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

 The hearing by the Human Services subcommittee lasted more than three hours, covering public comments on behavioral healthcare, mental health, and state hospitals as well as developmental disabilities. Even at that length, some who came to testify did not have a chance to speak before the schedule was overtaken by another budget hearing that started late in the afternoon. 

As a consequence, legislators did not hear about the 2014 consent decree under review in U.S. District Court. JudgeJohn J. McConnell, Jr. said on April 8 that he will hold the General Assembly responsible, if necessary, for funding  reforms to integrate persons with disabilities in their communities as required by the ADA.  

The hearing did draw comments highlighting differences between Rhode Island’s two systems of care for people with developmental disabilities: Care provided through private agencies and care provided through state-run group homes. 

Representatives of private agencies that would provide most of the services required by the consent decree pressed for a provision in Governor Gina Raimondo’s budget plan that would providea wage increase of 45 cents an hour for workers who are so underpaid they must hold down two or three jobs to survive. 

Union representatives for employees at state-run group homes, on the other hand, said that the plan to shift residents of group homes into shared living arrangements to provide more funding for the private agencies would come at the expense of their union jobs. 

Shared Living Target Number Cut

In February, when Raimondo submitted a combined budget proposal for the remainder of the current fiscal year and the next one, ending June 30, 2017, she proposed transferring a total of 500 people, about 38 percent of all group home residents, into shared living. 

On Tuesday, when a member of the House fiscal staff presented the BHDDH budget, the target number of 500 had been rolled back to 300 for the same 15-month period.

The original number had been widely described as very aggressive, especially in light of the fact that shared living is a mutual decision between the developmentally disabled individual and the private family that takes time to evolve, according to experts. 

In the month of March, 10 people with disabilities moved from group homes to shared living, bringing the total number of individuals living in private homes to 288 statewide, according to Linda M. Haley, a member of the House fiscal staff. 

BHDDH has budgeted a proposed 46 percent cut, or $15.5 million, to a system of 27 state-run group homes, with the current budget of about $33.2 million reduced to about $17.8 million in the next fiscal year, beginning July 1. 

The group home population at the state-run homes, currently 180, would be cut in half, with 90 remaining at the end of the next fiscal year, according to budget detail presented by Haley of the fiscal staff. 

Her presentation projected a total of $13 million in savings from group home residents in both the public and private system moving to shared living arrangements in the next fiscal year. 

Rep. Eileen Naughton, D-Warwick, chair of the human services subcommittee, asked the mother of a man with autism living in a group home what she thought of shared living. 

“I’m not a fan of it for my son,” said Robin Archambault. Besides autism, her son, Ryan, has a developmental disability and has been diagnosed with bipolar disorder, she said. 

Tory Flis, the manager of the home where Ryan Archambault lives, said “shared living is a wonderful level of support for some people, but it won’t work for everyone. “It has viability, but what is really needed is more person-centered services.” 

Personal choice through an individualized plan of support is at the heart of the consent decree, which derives its authority from the 1999 Olmstead decision of the U.S. Supreme Court. The Court affirmed the right of individuals with disabilities to live, work, and play in the least restrictive environment that is appropriate. 

Crisis in Staffing Direct Services

The direct support staff at the private agencies who would carry out the requirements of the consent decree are paid an average of about $11.55 an hour, according to the state’s figures.  

Tom Kane, a spokesman for 23 private agencies providing most of the direct care in Rhode Island, told the legislators that employees now average $10.77 an hour.  At those wages, the workers must hold down two and three jobs to make ends meet, according to Kane, group home manager Flis, and others in the field. 

Archambault, the mother of the man with autism, said the high turnover “saddens me.” The workers “are getting burned out” and leaving, she said. “As a parent, this scares me.” 

Kane, who is executive director of Access Point RI, said a living wage for a parent with one child at home is nearly $22 an hour. Among the developmental disability agencies, 48 percent of employees qualify for public assistance, and there’s a 33 percent turnover rate, he said. With each replacement, agencies put in about $5,000 in training, he said. 

Kane said the state reimbursement rate is so low that the private agencies operate at a loss of $5,700 a year for each person on the payroll because the state does not cover the full amount of employer-related taxes and benefits. 

Governor Raimondo’s proposed 45- cent hourly wage increase for direct service staff is “very generous,” Kane said, “I still believe it is insufficient.” With the raise, agencies would still operate at a loss for each person they employ, although it would be reduced to about $4,500 a year, he said. 

“In Rhode Island, like the rest of the country, there is a real crisis” in providing direct service for people with developmental disabilities, he said. 

“As was stated earlier,” Kane said, “you can go to a fast food restaurant and make more money. Why would you not want to do that?” 

“We are basically flat-funded where we were in 2006,” Kane said. 

“We have had positive work experiences with this administration,” he said, referring to BHDDH director Maria Montanaro and her deputies. 

“We ask that you support the Governor’s budget” and add “any other money you can find” to alleviate the crisis in the developmental disability service system, Kane said.                                                                           

State Employees Fear for Their Jobs

Jim Cenerini, legislative affairs coordinator for Rhode Island Council 94 of the American Federation of State County and Municipal Employees, spoke for nearly 300 state employees  who staff the state-run group homes.  

He said the proposed cut of nearly 50 percent of the state group home budget has created a great deal of unease among workers fearful they may lose their jobs. “I’m not sure how this is happening without closure of a group home or layoffs,” he said. 

“We support the private providers, but this looks like it would destroy our capacity to provide care,” Cenerini said. 

He said higher costs in the state-run homes reflect the needs of patients who are generally older and tend to be more medically compromised than in the private system, but costs also reflect “former Ladd employees who have strong union representation.” 

He said BHDDH has not explained to the union how the proposed budget cut would play out. 

In response to a reporter’s question shortly after Raimondo announced her budget proposal, BHDDH officials said that RICLAS employees displaced by group home residents moving to shared living would be able to transfer to vacant jobs. 

Cenerini said BHDDH wanted to move all residents of state-run facilities into the private system last year, but the union negotiated two cost-cutting agreements instead. The state never acted fully on those agreements, he said. 

“We are willing to make efficiencies, but we have to have an honest partner,” he said.   

Bill Proposes Ombudsman to Protect Rhode Islanders With Developmental Disabilities

By Gina Macris

An independent ombudsman who would represent the safety, health and other interests of adults with developmental disabilities in Rhode Island has been proposed by state Rep. Eileen S. Naughton, (D-Warwick).

Naughton filed a bill that would establish the state government position following the death of Barbara A. Annis, 70, in February.  Annis suffered massive infection that developed after a fracture of a thigh bone went untreated for several days. 

 In the immediate aftermath of Annis’ death, the Rhode Island Developmental Disabilities Council called for legislation creating an independent advocacy office like the one Naughton’s bill would set up.

“We have a child advocate as well as an advocate for the elderly and the mentally ill, but none for the developmentally disabled,” Naughton said in a statement April 8. If enacted, the bill would establish the ombudsman’s office within the state Department of Administration.

“We’ve taken great strides in our efforts to make Rhode Island society more inclusive for the developmentally disabled. The next step is to have an independent advocate to ensure that the health, safety, welfare and rights of the developmentally disabled are more secure,” she said. The bill is 2016-H 8038.

Naughton’s proposal comes as the state’s attention has been focused on issues affecting persons with developmental disabilities in two ways:

• Hearings in U.S. District Court about the state’s compliance with a consent decree that would transform how Rhode Island provides inclusive employment and other services to persons with developmental disabilities.

• · Multiple investigations involving conditions at more than 200 group homes for persons with developmental disabilities following Annis’ death.

The state Attorney General’s Office and State Police launched criminal investigations as a result of Annis’ death Feb. 15 at Roger Williams Medical Center in Providence. Five staff members of the state-run group home where she lived have been placed on paid leave.

The home, College Park Apartments on Mount Pleasant Avenue in Providence, has been closed by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), and the remaining 14 residents have been moved elsewhere.

The Rhode Island Disability Law Center has opened an investigation into the welfare of Annis’ former housemates.

In addition, BHDDH, in cooperation with the state Department of Health, last month began unannounced inspections of 269 private and state-run group homes.

Judge Says RI General Assembly Shares Responsibility for Implementing Decree

By Gina Macris

Key elements of Rhode Island’s compliance with a federal consent decree aimed at correcting violations of the Americans with Disabilities Act depend on funding that has not yet materialized.

The funding issue surfaced repeatedly during day-long testimony April 8 before U.S. District Court Judge John J. McConnell, Jr. who is overseeing compliance with the consent decree, signed in April, 2014.

 Officials who took the witness stand referred often to two items in Governor Gina Raimondo’s proposed budget for the next fiscal year:  $5 million for wage increases to staff who provide direct care to the developmentally disabled and nearly $1.9 million for enhanced services to help a target group of about 75 people get jobs and gain access to non-work activities in their communities.

 Jennifer Wood, deputy secretary of the Executive Office of Health and Human Services, said, “My task is to ensure that when the legislature goes home in July, that budget is intact.”

To which McConnell responded:  “I hope the legislature understands it is equally as responsible as the Governor for compliance. The Court will take action against whoever in government fails to fund it,” he said.

Wood said she would be sure to convey the message.

On Tuesday April 12, the House Finance Committee is expected to hear the budget proposal for the agency principally responsible for implementing of the consent decree, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Nicole Kovite Zeitler, a lawyer for the Department of Justice, contested the assertion the state made in an April 1 status report that it is in “substantial compliance” with the consent decree. The decree resulted from DOJ’s investigation of sheltered workshops that employed people with developmental disabilities at sub-minimum wage.

Any increase in the number of people with developmental disabilities who have gotten jobs in the last two years has not been the result of any state efforts, Zeitler said.

Rather, “if people are working it’s because job coaches and families work really hard” to help them, Zeitler said.

“The system will be at a standstill until a rate redesign allows employers to actually pay direct service providers a living wage,” she told the judge.

A redesign of the reimbursement rates to private agencies is one of several compliance efforts that the state has in the planning stages, although those talks have been going on for nearly a year, according to A. Anthony Antosh, director of the Sherlock Center at Rhode Island College. The Sherlock Center provides technical assistance and guidance to BHDDH on implementing the consent decree.

None of the testimony in federal court on April 8 made it clear how much money it would cost to overhaul the current reimbursement rate system or whether Raimondo’s budget proposal to increase funding is enough to accommodate such a change.

Antosh, however, said that the state is spending about $15,000 for each person with a developmental disability who attends a segregated day program, about half what it costs for job coaching and other community-based services.

Zeitler noted that funding letters that go out to individuals with disabilities do not say anything about employment-related services. Rather the letters list other categories of services and the associated funding.

“They need to cash in their hours for day services to buy employment services,” Zeitler said.  Moreover, the rate for job-related services is twice as much as for day services, she said. 

“That’s why we need to move to a different system,” said Wood, the deputy secretary of the Executive Office of Health and Human Services.

Zeitler said that the consent decree requires individuals have meaningful options for community integration no later than their 18th birthdays.

Wood said “that is occurring, but sometimes there’s a delay in the handoff.”

McConnell, however, referred to a statement filed with the court by the Rhode Island Disability Law Center, which said clients had experienced delays in obtaining services up to a year after their 21st birthdays.

Wood said she was troubled by that statement, and had asked staff to follow up.

“I am not in any way saying that is acceptable,” she said.

She said it is not state policy to begin adult services at age 21, but “it takes time for practice to meet policy.” (State law says persons with developmental disabilities become eligible for adult services at age 18.)

Wood testified extensively about efforts at high-level interdepartmental coordination, especially when it came to generating data for the purposes of complying with the consent decree. In fact, Wood herself emailed the most recent set of figures to DOJ lawyers after midnight the night before the hearing.

Lawyers for the DOJ and Charles Moseley, the court monitor for the consent decree, have been pressing for an accurate census of the population covered by the consent decree as a pre-requisite for determining whether the state is meeting its compliance targets on a continuing basis.

At the end of the day, Zeitler and Moseley said they still need time to figure out whether the latest head count - about 400 more than the 3,000 reported last week - was accurate and unduplicated.

Wood said a chief problem in gathering the data was that young people and adults with developmental disabilities may receive services from one to three agencies that for decades have not shared confidential information with each other.

But in the past few months, Wood said, the Executive Office of Health and Human Services has coordinated a push to change that practice. “We are now one big happy data family,” she said.

Going forward, Zeitler said, the DOJ will be watching to see whether the state fulfills its promises, like having an improved reimbursement structure in place for private service providers by July 1. 

McConnell’s next review of the case is scheduled for May 2.

“For whatever it took,” McConnell told Zeitler, “it looks like you got people’s attention. I hope you don’t lose that, either in the short run or the long run,” he said.

Legislators Describe "Broken" System of Disability Services

By Gina Macris

For some individuals, there is a big gap between vision and reality under the terms of the federal consent decree that attempts to bring Rhode Island into compliance with the Americans With Disabilities Act.

Legislators described some of the real-life experiences during a session of the House Committee on Health, Education and Welfare (HEW), Thursday, April 7, at which two officials involved with the consent decree briefed lawmakers about progress of the court case.

State Rep. Dennis Canario, D-Portsmouth, said that one of his constituents used to have work through the James L. Maher Center, which is headquartered in Newport, but now he sits at home, doing nothing.

The man had been in a job where he interacted primarily with other people with disabilities, while the consent decree mandates that Rhode Island’s developmental disability system move toward community-based employment. Canario said, in effect, that the second part of the equation has not materialized for his constituent.

“I don’t understand the whole thing,” Canario said, “There are broken parts to it. People are becoming victims.”

A similar account was described by Rep. Joseph N. McLaughlin, D-Cumberland and Central Falls, who said one of his constituents is a man who uses a wheelchair and has had a total of 17 surgeries for a medical condition.

The man’s family has been notified that his state support would be cut off “because he wasn’t working,” McLaughlin said, adding, “Somebody screwed up somewhere.”

Charles Moseley, the federal court monitor on implementation of the consent decree, said there is a variance process for individuals for whom employment is not appropriate.

 Moseley also said he wants to hear from families and individuals who are having problems during the implementation of the consent decree. 

He and A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said a lack of funding is the chief cause of the problems experienced by individuals who depend on developmental disability services. 

Antosh, who provides technical expertise and guidance to implementation efforts, said a total of 20 percent was cut from the state’s developmental disability budget between 2009 and 20012.

Progressive practices that were commonplace in 2000 and 2001 were “deconstructed” as a result of the cumulative impact of funding reductions and led to the U.S. Department of Justice initiating an investigation into the state’s sheltered workshops, Antosh said.  That investigation resulted in the consent decree, signed in 2014.

An evidentiary hearing on the state’s compliance with the decree – which undoubtedly will touch on funding – is set to begin at 10 a.m. Friday, April 8,  in U.S. District Court before Judge John J. McConnell, Jr.

The HEW Committee Chairman, Joseph N. McNamara , D-Warwick, pointed to gaps in service when young people transition from school-based programs to adult services.

“The last few monthsof school are cruel and unusual punishment,” McNamara said. “It’s one of the saddest things that take place in our schools,” he said.

McNamara said the House recently passed a bill sponsored by Rep. Samuel A. Azzinaro, D-Westerly, Deputy House Majority Leader, that would require school districts to retain students with disabilities through the end of the academic year during which they celebrate their 21st birthday. The bill now needs support in the Senate, he said.

Canario, a committee member and the father of a child with a disability, said the service gap is a big issue.

“I couldn’t agree with you more,” Moseley said.

“Are you saying that exiting school without a transition plan is a violation of the Americans With Disabilities Act?” Canario asked.

Moseley paused, as if to choose his words. The consent decree has “specific requirements” for transition services that include a career development plan, beginning at age 14, he said.

McNamara said, “Transition planning is not taking place.”

He cited the case of a young man from Westerly who was “helping out” at the General Assembly on Wednesdays in a student vocational experience and was suddenly “thrown out of school.”

“He doesn’t understand why he can’t help out with all these activities” any more, McNamara said.

The system is broken, Canario said. “Too many kids – young adults – are turning 18 and their services are being dropped.”

“I’m not disagreeing with you,” said Moseley.

Allegations of Service Gaps, Lack of Job Supports, Challenge RI Compliance With Consent Decree

By Gina Macris 

this article has been updated

Rhode Island has not expanded job development services to people with developmental disabilities as required by a 2014 federal consent decree, according to a key professional at the Sherlock Center on Disabilities at Rhode Island College. 

Claire Rosenbaum, the adult services coordinator at the Sherlock Center, filed a statement in U.S. District Court April 6 that says the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) does not include job development as part of its standard package of services. Instead, the department expects them to shift money from other funding categories to do that.
 
Rosenbaum’s statement helps lay the groundwork for a challenge to a claim by the state that it is in “substantial compliance” with the decree.  Judge John J. McConnell, Jr. is to hear evidence in the case Friday, April 8 at 10 a.m. 
 
Separate statements about delays and inadequacies in services, particularly for young people eligible for transitional supports, were filed earlier this week by the Rhode Island Disability Law Center and by Tammy Russo, the mother of a 23-year-old man who receives BHDDH-funded services. 
 
Rosenbaum’s statement concurred that “one of the greatest problems is the gap in services experienced by many individuals with disabilities as they transition from youth services to adult services.”  
 
“I know individuals who have experienced a gap in disability services, spanning anywhere from a few weeks to a few months to a year or more,” she said.
 
Often, because many providers are refusing new cases, the only option is so-called “self-directed supports”, in which individuals or their families manage specific BHDDH allocations, organizing services and hiring their own direct service workers, Rosenbaum said.
 
Rosenbaum, who is widely respected in the developmental disability community, has an adult daughter who receives BHDDH-funded services, and her job puts her in touch with about 250 adults with disabilities and their families.
 
She said the lack of openings for new clients in the direct service system makes it difficult for individuals to get job development services. 
 
Unlike BHDDH, the Office of Rehabilitation Services of the state Department of Human Services provides funding to direct service agencies for job development services.  However, it pays a flat rate for each job placement, no matter how extensive the needs of the client. Consequently, the developers tend to work with less challenging candidates for employment,  Rosenbaum said.

Direct ORS employment services tend to be limited to job assessments which many clients find to be “excessive and not beneficial to finding employment,” she said.

In another statement filed with the court, Anne M. Mulready, supervising attorney of the Disability Law Center, said Rhode Island law makes youth with disabilities eligible for adult services once they reach 18, but clients say BHDDH does not process their applications until they approach the age of 21.

Mulready currently represents two 19 year-old clients with complex needs whose families each have been waiting about a year for word on eligibility from BHDDH.

“It will take a significant amount of time to plan for and locate appropriate services for these clients,” she said. “Although they are currently in school, BHDDH participation in planning and coordination needs to be occurring now, so that these individuals will not experience gaps in services when they exit high school,” she said in the statement.

In her statement, Russo said she waited two years for BHDDH to find her son, Joey, eligible for services. She searched for five months to find a service provider, because seven of the ten she contacted were not accepting new clients.

Then, BHDDH delayed the start of services until a month after her son’s 21st birthday, which was Jan. 20, 2014, Russo said.  

Because her son’s agency was unable to organize a program of community-based supports for Joey, Russo did it herself, putting together a schedule that included exercise at the YMCA, education at the library with workbooks and supplies she provided, as well as bowling and volunteer experiences she arranged through people who knew Joey at school or in the community.

In effect, Russo served as the architect of the “person-centered planning” now required under terms of the consent decree. She said support staff have told her that their employer used the plan she organized for Joey as a model for helping other clients.

Rosenbaum, meanwhile, said that another “persistent problem” is inaccurate assessments of individuals’ needs and correspondingly inadequate allocations of funding.
 
“I know individuals who have had their (funding) lowered following a reassessment,” she said, despite the fact that the answers were very similar to the original assessment.
 
“Furthermore, I have heard complaints that some interviewers are not recording the respondents’ answers as given and/or are challenging those responses” during the assessment interviews, Rosenbaum 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.

Attorney General Identifies Group Home Resident Whose Death Prompted Investigations

Rhode Island Attorney General Peter F. Kilmartin has named Barbara A. Annis as the 70 year-old woman whose Feb. 15 death has triggered criminal investigations and unannounced inspections of hundreds of group homes for persons with developmental disabilities. 

Kilmartin’s spokeswoman released Annis’ name April 1, but gave no additional information, according to the Providence Journal. 

Annis lived in the now-closed College Park Apartments at 612 Mount Pleasant Avenue, Providence, a state-run facility built to accommodate patients who have chronic medical conditions as well as intellectual or developmental challenges. 

She was admitted to Roger Williams Hospital Feb. 9 for what the College Park staff reported as a bad bruise, but which the hospital found to be a broken thigh bone that had become infected. After she responded to initial treatment, she was transferred to a nursing home, according to an official of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  But her condition soon worsened and she was readmitted to the hospital, where she died. 

There have been a total of six allegations of abuse or mistreatment at College Park since January, 2015, including an incident that occurred after Annis died. The State Police and the Attorney General’s Medicaid Fraud and Patient Abuse Unit have begun criminal investigations, and 5 of 27 state employees who worked at College Park were placed on paid leave. 

In addition, surprise inspections have begun of all licensed group homes in the state, about 278 private and state-run facilities, according to a spokesman for Elizabeth Roberts, Secretary of Rhode Island’s Executive Office of Health and Human Services. Nine of the 278 homes are vacant. 

Residents who remained at College Park – a total of 14 people – all have been moved, according to BHDDH, which ran the home. The Rhode Island Disability Law Center has opened an investigation into the welfare of those people.   

After College Park closed March 25, Roberts said, “I remain outraged by the alleged incidents at the College Park Apartments group home.” 

"Mythbusters" Have Fun Delivering Facts About Consent Decree to Audience of Peers

Natalie Bacon, left, and Meghan O'Leary, right, singing "I'm the Boss of Me," with original lyrics set to the tune Folsom Prison by Johnny Cash. In the background, Christopher Pawlyk plays the guitar. 

By Gina Macris

About a dozen adults with developmental disabilities and their helpers combined hard facts and fun as self-styled “Mythbusters” Monday, March 28 to counter rumors and half-truths about the complicated federal consent decree that demands they - and thousands of others - be more fully integrated into their Rhode Island communities.  

The narrated show, put on by the current leadership class of Advocates in Action, played at the Crowne Plaza in Warwick before a crowd of about 200 people, many of whom receive state services, just like some of the presenters. Family members, support staff, and friends also attended.  

The spring statewide meeting, an annual event, offered the students a chance to practice emerging skills in advocating for themselves and others as they wove together videos, music, and live speaking parts. The leadership class, which concludes in June, offers a 10-month learning experience for Rhode islanders with developmental disabilities every year. 

The first myth on the agenda, as explained by Amy Ethier, was that “Department of Justice came to Rhode Island and said that everyone who has a dd (developmental disability) has to work. If we don’t work, we’ll lose our services.”  

That statement is not true, said Andrew Whalen, who works part-time at Advocates in Action.     

According to the consent decree, “those people who want to work will get the support they need to work” in jobs paying at least minimum wage, he said. “People can choose not to work, but it needs to be an informed decision.”  

To make the point that life experience is at the heart of an informed decision, Deb Kney, the administrative director of Advocates in Action, presented  a take-off on the long-running Life cereal television commercial, in which three-year-old “Mikey” finally tries the food that is “supposed to be good for you” after his two friends refuse to take a bite.    

courtesy advocates in action

In the video, Keith Wilcox takes on the role of “Mikey,” who is flanked by friends egging him on to eat the cereal. The final message, delivered poster-style on a mock cereal box: ” Real Life Tastes Great! Sample Some Today!”  

Though it was emphasized during the presentation, the state does not now have enough resources in place to readily help everyone with a developmental disability who wants to get a job, or to immediately offer real life experiences to everyone who needs to make an informed decision about applying from a waiver from work.  

The way the state will pay for implementing the consent decree is one of the key issues that has been unfolding since January in hearings in U.S. District Court in Providence.  

Another thing the court wants to see is an assurance that services will fit an individual’s needs.  

It’s not one-size-fits-all, the leadership class impressed upon its audience.  

Those receiving services, according to the consent decree, are entitled to an individualized service plan that places each person’s needs, strengths and interests at the heart of planning and delivering services.   

Jim Petrone, who uses a motorized wheelchair and a communication device, demonstrated that point in a pre-recorded video which shows him listening for a minute while several people talk about his likes rather than asking him directly. Then Petrone conspicuously turns up the volume on his communication board and a deep voice booms: “Attention! Excuse me. This is my meeting and I need to talk now.”   

courtesy advocates in action

At the other extreme,  a video clip dispelled the myth that the mandate for individualized supports includes luxuries. Christopher Pawlyk donned a lei, oversized sunglasses and a flower-topped hat trimmed with halo of fake fur to deliver this line: “Well, this person wants to take an individual vacation to Hawaii two to three times a year.”

Medicaid does not pay for “stuff,” but for the supports and services needed for people to have access to experiences in their communities, the leadership class emphasized.  

The group also busted the myth that Rhode Island is closing all its group homes AND moving everyone into shared living arrangements with individual families.  

Class member Amanda Campbell followed up with the facts. “It is true that the state wants you to become more educated and informed on shared living, but it’s your choice. You have the right to live where you want to live,” she said.  

Advocates In Action invited an expert on shared living, Joanne Malise, to speak on that housing option. She described it as a “mutual choice” involving a family and the individual looking for a place to live.  

“You get to know each other and both people decide to live together,” she said. Malise is director of Living Innovations, an agency that specializes in supporting shared living arrangements.  

For those seeking a different option, financial realities make house-hunting a bit more complicated. Questions from the audience indicated people with developmental disabilities are having a difficult time securing subsidized apartments for which they are eligible.  

People living in group homes who may not be candidates for shared living arrangements may have to move anyway if their home is closed during the state’s shift to shared living.  

Charles Williams, director of Social Services for the Division of Disabilities in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said the group homes must give residents 30-days’ notice before a house closes. The agency is obligated to continue to provide support until alternate housing is found, he said.   

While people with developmental disabilities have the right to choose the agency which serves them, the state does not reimburse them for all their costs. That issue is also embedded in the federal court case. Financial constraints have prompted the state’s private providers to refuse new clients, particularly if the individuals have extensive, costly needs. 

Unannounced Group Home Inspections Begin in Rhode Island

By Gina Macris

Unannounced inspections of Rhode Island group homes for adults with developmental disabilities began Monday March 28 in the wake of the recent death of a woman who lived in the College Park Apartments in Providence, according to a spokesman for the Executive Office of Health and Human Services.

College Park closed March 25, the day after the last of the 14 people still living in the apartments were moved to new housing. Since the beginning of 2015, College Park had been the subject of a total of six complaints of patient abuse or mistreatment, according to a spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). 

In addition to criminal investigations underway by the State Police and the Attorney General’s Office,  Elizabeth Roberts, the Executive Secretary of Health and Human Services, has ordered a “comprehensive review” of all licensed group homes in Rhode Island whether they are privately owned or run by the state, according to her spokesman, Michael Raia. He clarified previous indications from BHDDH that the inspections were to target only state-run group homes.

Raia said March 29 that Roberts had asked BHDDH Director Maria Montanaro and Department of Health Director Nicole Alexander-Scott to work together on the review, starting with inspections of the homes with the “highest risk assessment.” 

Inspectors and investigators from both the health department and BHDDH are working as a team on the inspections, which are being prioritized according to “incident reports and complaints for a set period of time,” Raia said. He could not immediately elaborate on the time period in question, although he said the initial round of inspections includes both private and state-operated facilities.  

Updating previously available statistics, Raia said there are 27 licensed state-run group homes, excluding College Park, and 251 licensed homes owned by private agencies.

Nine of the privately-run group homes are vacant, leaving 242 homes that house a total of 1,162 people as of Feb. 29, he said.  Raia said 156 individuals live in state-run group homes, and 284 people are with families in shared living arrangements.   

DD Agency Faces Scrutiny From RI Law Enforcement, Governor and Federal Court

By Gina Macris

With criminal investigations underway into the death of a woman with developmental disabilities in its care, the Rhode IslandDepartment of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) is gearing up for an important deadline on another front.

April 1 is the date by which BHDDH must submit a court-ordered fiscal plan for complying with a 2014 consent decree that enables people with developmental disabilities to get jobs and enjoy other  activities in their communities as required by the Americans With Disabilities Act. Judge John J. McConnell, Jr. has scheduled an evidentiary hearing on the state’s plan for April 8 in U.S. District Court, Providence.

The federal monitor in the case has expressed doubts that the state will be able to rearrange its budget in the next year to make the needed changes.

The Rhode Island consent decree, the first of its kind in the nation, also has received high-level attention from the U.S. Department of Justice in Washington. On Friday, March 18, the Acting Assistant Attorney General for the Civil Rights Division, Vanita Gupta, met with Governor Gina Raimondo to discuss the consent decree.

Coincidentally, the meeting occurred the same day that state human services officials announcedthe death of a 70 year-old woman with developmental disabilities, who had succumbed to a massive infection as a result of a leg fracture that had gone untreated for several days at the College Park Apartments group home on Mount Pleasant Avenue, Providence. Her death on Feb. 15 is under investigation by the Attorney General and the State Police.

The Attorney General’s Office is conducting a total of three investigations in connection with College Park, according to spokeswoman Amy Kempe. She declined to elaborate.

 Including the woman’s death, there have been a total of six incidents of patient abuse at College Park since January, 2015, according to a BHDDH spokeswoman.

 The remaining 14 College Park residents all had been moved elsewhere by the end of the day Thursday, March 24, and the state-owned facility closed March 25, according to Michael Raia, communications director for the Executive Office of Health and Human Services.

He said Governor Raimondo gets regular updates on the investigations related to College Park and is “very focused” on reviewing those findings and receiving an assessment of any systemic problems that health and human services officials may identify.

The Executive Secretary of Health and Human Services Secretary, Elizabeth Roberts, has ordered spot-checks of state-rungroup homes beginning next week, Raia said on Friday , March 25. These checks are to be cooperative efforts between the Department of Health and BHDDH, which currently only has two investigators in Quality Assurance/Quality Improvement.

Raia described the meeting between the Governor and the DOJ’s civil rights chief as a “courtesy call.”

The DOJ requested the meeting, Raia said. The two discussed the state’s appointment of a Consent Decree Coordinator, funding, and the collection of data, he said.

“The meeting was an opportunity for the Governor to listen to the U.S. Department of Justice’s thoughts, opinions and concerns,” Raia said.

The court monitor in the case, Charles Moseley, expressed his concerns in a report to Judge John J. McConnell, Jr. that was made part of the court file on March 18.

The report that the state must turn into the Judge by April 1 is to contain evidence that there is a defined consent decree budget, including a per-person allocation based on the actual costs of implementing community-based activities required by the consent decree.

Moseley, however, said he is concerned the state will not be able to free up enough money in the next year or so to satisfy the consent decree.

According to Raimondo’s budget, the bulk of the funding for mandated services would come from moving a total of 500 people with disabilities, 38 percent of Rhode Island’s entire group home population, into less costly “shared living arrangements” with families by June 30, 2017. 

In the past ten years, a total of 267 people have gone into shared living.

The shift of 500 people would realize a total of $15.5 million in savings by June 30, 2017, but Moseley said he is worried that those targets are “too optimistic” and that BHDDH will not be able to achieve them in a little more than a year’s time.

Moseley also wrote that he is concerned BHDDH will not be able to clearly identify a per-person cost as a foundation for projecting the budget needed to help people obtain supported employment and access to community-based activities.

The state now pays below-cost rates to more than 20 private agencies providing most of the services to more than 3,600 Rhode Islanders with developmental disabilities. The agencies either operate at a loss or depend on outside grants as well as income from programs not dependent on BHDDH funding.

“Although the state has not yet provided the needed financial data, it should be noted that it is, reportedly, meeting consent decree placement targets” for supported employment, Moseley said.

“This must be confirmed, however. From my discussions with providers and state BHDDH staff it appears that these placements are being funded by providers through existing resources, and, as such, may not be sustainable over time. I will be tracking this in the months to come.” 

Moseley noted several positive developments, including staff appointments within state government that he expects will aid implementation of the consent decree.  Among the new positions is the Consent Decree Coordinator, Mary Madden. The full scope of her authority is not yet clear, and Moseley said he has requested a copy of her job description.

In the two years the consent decree has been in effect, both the DOJ and the monitor have cited a lack of interdepartmental leadership and coordination as one of their primary concerns. They have sought appointment of a high-ranking state coordinator who has the authority over n BHDDH and two other agencies responsible for some portion of the reforms, the Rhode Island Department of Education (RIDE) and the Office of Rehabilitation Services of the Department of Human Services (ORS).  

In other developments noted by Moseley, BHDDH has:

• Hired a Chief Transformation Officer. Andrew McQuaide previously served as consent decree coordinator within BHDDH, but he did not have authority outside that agency.

• Advertised for a supported employment coordinator to work with private service providers

• Received approval to hire a chief operations officer and quality improvement coordinator.

“These positions are important to provide leadership and guidance over the systems changes that need to take place,” Moseley said.

Raia said the quality improvement coordinator’s post has been advertised and applications are being accepted.

The new positions, funded in the Governor’s budget for the next fiscal year, reflect the fact that she is “committed to achieving the reforms outlined in the consent decree,” Raia said. He also cited a $2 million increase in funding for community-based daytime activities and an additional $5 million that would provide a raise of 45 cents an hour to staff of private agencies who work directly with people with disabilities. Model progams showcasing community-based services would receive a $1.9 million boost.  

Moseley said BHDDH, RIDE, and ORS are working together on implementing a quality improvement plan in keeping with the consent decree requirements.

Moseley concluded that “the Court’s close oversight over the state’s progress on meeting the terms and conditions of the consent decree is having a very positive impact on both the quality and the pace of change in the state.”  McConnell began holding status conferences on the case in January.

RI Found Six Cases of Abuse Cases Before Moving to Close Group Home In Providence

College Park Apartments at 612 Mount Pleasant Ave., Providence, is to close by March 25.

By Gina Macris

The recent death of a 70-year old resident of the College Park Apartments in Providence was one of six incidents of patient abuse reported at the same state-run group home for people with developmental disabilities since January, 2015, according to the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.) 

On Monday, March 21, a department spokeswoman declined to answer questions about the nature of each investigation or shed light on four “corrective action plans” put into place in 2015 in an effort to halt the abuse. Two more allegations of abuse were reported this year, including the death of the unidentified woman Feb. 15.  

Spokeswoman Linda Reilly cited confidentiality concerns – even when declining to release statistics about the number of investigations handled by the BHDDH Quality Assurance/Quality Improvement unit. 

Reilly did confirm unrelated allegations of patient mistreatment at Zambarano Hospital in Burrillville, where two state employees have been put on paid leave. 

Five of 27 staff members at College Park Apartments are also on paid leave, she said.  Criminal investigations are underway at both locations. 

 Reilly was asked why BHDDH decided to close the College Park group home for people with developmental disabilities rather than changing the staff. The department is under a federal court order to put the needs and wishes of people with developmental disabilities at the heart of all long-range plans devised for their benefit.  So-called person-centered planning is one of the central provisions of a 2014 consent decree aimed at giving people with disabilities  opportunities for integrated work and leisure activities in their communities. 

Reilly said each of the 14 residents atCollege Park indicated a desire to move rather than stay at the facility. The family members and guardians of the residents reviewed the individual plans for their loved ones, Reilly said. 

Reilly did not elaborate on reasons for closing the home, except to say that the BHDDH director, Maria Montanaro, called on an outside agency to investigate “in order to corroborate the decision to close College Park.” 

That agency, Day One, “completely agreed that the house should close,” Reilly said. 

Day One was consulted after the 70 year-old College Park resident died at Roger Williams Medical Center and another resident of the same home subsequently was found to have “unexplained injuries” March 8, Reilly said. The dead patient had a fracture of the thigh bone that had not been treated promptly and became infected. 

Day One was consulted because of its expertise in dealing with people with limited verbal ability, Reilly said. The agency is better known for its expertise in sexual abuse and domestic violence, although there were no allegations of sexual abuse at College Park Apartments, Reilly has said.

Budgetary considerations had nothing to do with the decision to close the home, Reilly said. All residents are to be moved by Friday, March 25. 

Governor Gina Raimondo’s budget would cut an overall $15.5 million in non-salary operating expenses for 23 state-run group homes, about 46 percent of the current budget of $33.2 million, in the next fiscal year to help make money available to help fund the 2014 consent decree mandating integration. 

Reilly also clarified previous comments  by Health and Human Services Secretary Elizabeth Roberts about “targeted investigations” of group homes for people with developmental disabilities to be made by BHDDH and Department of Health officials. 

Reilly said the term referred to “spot checks” to be made of the 23 homes run by BHDDH itself through the Rhode Island Community Living and Supports  (RICLAS) unit of the division of developmental disabilities, “because we will not tolerate any neglect or mistreatment of people in our care.” 

RICLAS houses 210 of of a total of about 1300 with developmental disabilities who live in group homes in Rhode Island. The other people live in homes run by private service agencies that are not part of Roberts’ “targeted” spot checks.

Woman in RI State-Run Group Home Dies, Prompting Criminal Investigation

By Gina Macris

The death of a 70 year-old woman with developmental disabilities in February has prompted the state of Rhode Island to order the group home where she lived to close in the next seven days,  health and human services officials announced March 18. 

The death of the woman, who had an untreated leg fracture, occurred after several allegations of abuse during the last year at the state-run home, College Park Apartments at 612 Mt. Pleasant Ave., Providence.

Health and human services officials have called in the state’s attorney general and the Rhode Island State Police to investigate.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has placed five employees of the group home on immediate paid leave and will provide strict supervision of the rest of the staff as they work to resettle other residents,  according to a statement from the Executive Office of Health and Human Services.

The remaining 14 residents at College Park Apartments are all to move to other housing before the group home closes next week.

The woman, who was not identified, was sent to  Roger Williams Hospital Feb. 9 for  what the staff reported was a bad bruise, but an x-ray determined that it was a broken thigh bone. The wound was infected, according to a BHDDH spokeswoman. . 

Linda Reilly, the spokeswoman, said the woman improved in the hospital and was sent to a nursing home, but the infection became worse and she was readmitted to the hospital, where she died Feb. 15.

An autopsy has been done but a report has not yet been completed, Reilly said in an email. 

College Park Apartments is both licensed and operated by BHDDH. Its internal investigation unit had responded to multiple reports of mistreatment and abuse in the past year, the department director, Maria Montanaro said at a press conference. .

“We will not tolerate mistreatment of patients anywhere in Rhode Island, including and especially inside group homes under our management. And we will not hesitate to close a group home when residents are at risk,” Montanaro said.

Health and Human Services Secretary Elizabeth Roberts said, “Injuries and mistreatment at the College Park Apartments are unacceptable.”

Going forward, she has ordered the state Department of Health to work with BHDDH on “targeted investigations” of group homes throughout the state.

The state-run network of group homes and apartments for people with developmental disabilities, called Rhode Island Community Living and Supports (RICLAS), houses 210 individuals. That number is 16 percent of about 1,300 people with intellectual challenges living in group homes in Rhode Island. The majority of the group home residents are served by private agencies.

Consent Decree's Community Task Force Airs Worries

By Gina Macris

Nicole Zeitler

While a federal judge is poised to compel the state of Rhode Island to comply with a federal consent decree intended to benefit people with developmental disabilities, the General Assembly, which holds the purse strings, does not appear to have a full understanding of the matter.

Donna Martin, executive director of a network of private disability service providers, expressed that concern March 15 at a meeting of the Employment First Task Force (EFTF), created by the 2014 consent decree to reach out to the community and to make recommendations as the state tries to implement the federal court order.

More than two dozen people, including Nicole Zeitler and Peter Stephan, lawyers for the U.S. Department of Justice, attended the task force meeting at Martin’s office at the CommunityProvider Network of Rhode Island (CPNRI) on Jefferson Boulevard in Warwick. The task force is chaired by Kevin Nerney, assistant director of the Rhode Island Developmental Disabilities Council.

The two DOJ lawyers had appeared at a hearing in Providence the previous day before U.S. District Court Judge John J. McConnell, who displayed a growing impatience with the state’s piecemeal compliance and affirmed a schedule for considering remedial action in April. 

Martin said, “I’m concerned about what’s going to happen after the evidentiary hearing and how the executive branch moves from the fallout of that without the full understanding of the legislature.“

McConnell is to hear evidence on compliance April 8 to help him shape a new court order for a remedial action plan.

“It concerns me that the consent decree is silent” on funding, Martin said. “That puts the onus on the advocacy community. The burden the developmental disability community is facing far predates the consent decree,” she said. “When the dollars are not appropriated, our hands are essentially tied.”

Martin was alluding to a 13 percent cut in the developmental disabilities budget the General Assembly made in the early hours of the morning on the last day of the 2011 session. The budget has not recovered the lost funding, while the caseload has grown in the last five years.

“While I understand that there are separate branches of government, I’m concerned that there is not a stronger coordinated voice with the legislature,” Martin said. 

Ray Bandusky, executive director of the Rhode Island Disability Law Center, said, “I think it’s important to emphasize that the overwhelming majority of legislators abhor consent decrees. I don’t see it being a big motivator.” 

The DOJ’s Zeitler said that “the consent decree doesn’t specify how it is to be funded,” but it does say that it will be “fully funded.”  The agreement was signed in 2014 by former Governor Lincoln Chafee and DOJ officials. 

In January, state officials acknowledged that the budget does not now contain enough money to implement the court order.

Zeitler said that the state promised McConnell it would show him budget numbers that are linked to compliance results for specific individuals affected by the consent decree. “We didn’t come up with that out of nowhere; It came from the consent decree,” Zeitler said.

 “We are waiting for a usable summary” of Governor Gina Raimondo’s proposed new budget; something that goes beyond the executive summary she included in her budget message to the General Assembly in early February, she said. 

The consent decree says funding is supposed to be built around the needs of the individual. In that context, Zeitler said it is “helpful to hear” from consumers who might say, “I ended up getting my tier (funding level) changed and it didn’t have anything to do with my needs.”

In between their appearances in court and at the public EFTF meeting, Zeitler and Stephan have met privately with people receiving services and with family members.

Funding hinders individualized services

The current funding structure hinders the community integration and personal choice that is at the center of the consent decree, because it is driven by ratios and has no flexibility to accommodate people’s needs,  Martin said.

To illustrate her point, Martin gave a hypothetical example of a day facility with a staff-to-client ratio of 1 to 8. If one staff member accompanies a person with a disability somewhere, that leaves another staff member with a double ratio of clients, Martin said. .

In other words, one person’s integration comes at the expense of another’s need for staff attention.

One parent said pressure from the consent decree to close segregated day facilities like the one in Martin’s example is resulting in groups of people with disabilities riding around in a van or car when one of them has to go somewhere.

“The day center has become mobile,” said Mary Beth Cournoyer.

“It looks like we’re following a path (toward community integration) on paper, but we don’t get there,” Cournoyer said.

She also indicated that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) continues to determine an individual’s funding level through an assessment that was never designed for that purpose.

The consent decree specifically prohibits the state from using the assessment, called the Supports Intensity Scale, as a funding tool. 

Cournoyer said it would be “enormously helpful  to identify the roles and responsibilities of the task force.” 

The group, hampered by fragmented communication from state agencies and a lack of data needed to formulate policy recommendations, has struggled to define its role over the last two years.

Cournoyer said individuals with disabilities either are not being informed or are misinformed about changes that affect them. “Parents are screaming that they are going to take the money away,” she said.

Zeitler said, “There are amazing people in this room. I have heard all of you talk. I have every belief you can use the power you have.”

The consent decree says the Employment First Task Force “should include certain people, and more than half of you are advocates and parents,” Zeitler said, scanning the room. “Our position is that the state should be taking information from the task force and using it to change systems,” she said. 

Coordinator Introduced

The group welcomed Mary Madden, the interim consent decree coordinator, who spoke about her approach to the newly created secretary-level position.  

Madden, with 30 years’ professional experience in developmental disabilities in Rhode Island, has become widely respected in that field.

She said that while she will work toward the compliance goals spelled out in the consent decree, “the greater goal we should care about is inclusive lives for people in the community.”

She said she hopes to bring people from various departments of state government together“to work seamlessly as a team.”

The DOJ and the court monitor have argued that the consent decree calls for a coordinator with the clout to require cooperation from department heads.

Martin of CPNRI said her organization is pleased that the coordinator’s position has been moved outside any department of state government. “It’s difficult to effect change in departments that continue to be very siloed” when the coordinator’s position remains within one department, she said.

Before Madden’s appointment, the coordinator’s position was assigned to BHDDH. The former coordinator, Andrew McQuaide, now serves as Chief Transformation officer at BHDDH.

Madden said, “I want to do a job that matters and has impact. I’m an action-oriented person. I’ve never worked for state government; just the private sector. When something needs to get done, you just do it,” she said.

Even so, Madden said, she is sure she will encounter bureaucratic situations.  She also said “there are a lot of things about this position that are unknown and haven’t been hammered out.” 

Judge Losing Patience With RI in Disabilities Case

Federal court building on Kennedy Plaza in Providence, RI

By Gina Macris

An increasingly impatient federal judge warned March 14 that unless the state of Rhode Island shows progress soon in complying with terms of the so-called “sheltered workshop” consent decree of 2014, he is likely to impose sanctions.

 “To say I’m frustrated with the lack of progress is an understatement,” said Judge John J. McConnell, Jr.

“I’m not going to allow much procedural rollout before they (the state) will be sanctioned for non-compliance,” he said.  He did not elaborate.

The chief issue is a lack of money to implement the supports necessary to help people with developmental disabilities gain employment and participate in other non-work activities in their communities, as required by the consent decree.

The decree affects a total of about3,600 Rhode Island residents with disabilities, many of whom had been in sheltered workshops making sub-minimum wages in violation of Title II of the Americans with Disabilities Act. The requirements of Title II were spelled out in 1999 in a landmark U.S. Supreme Court decision entitled Olmstead v. L.C.

McConnell asked the lawyer for the U.S. Department of Justice (DOJ), Nicole Kovite Zeitler, why the DOJ had not already filed a contempt motion. 

Zeitler noted that at the previous status conference Jan. 26, the judge had indicated a willingness to work with both sides on cooperative measures short of contempt.

McConnell’s question also prompted a discussion ofshort-term deadlines the judge already has put in place that could lead up to a contempt finding if the state misses them.                                                                                                                       

By April 1, the state is to submit a status report on compliance that reflects a coordinated effort among the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the Rhode Island Department ofEducation (RIDE), and the Office of Rehabilitative Services of the Department of Human Services (ORS).  The report is intended to help the judge evaluate compliance.

On April 8, the heads of the three agencies, as well as the director of the state’s Office of Management and Budget (OMB), are to appear in court to produce evidence of compliance in a formal hearing.  If, after hearing the evidence, the judge finds the state must take additional steps, he will issue an order listing remedial actions.

DeSisto and DOJ lawyers originally proposed the compliance report be submitted by April 11 and the hearing be held April 18, but McConnell has moved each of those deadlines up by ten days.

Among other things, the latest order requires the state to present evidence that there is a defined budget for implementation of the consent decree that can link expenditures to results for specific individuals.

The court monitor for the case, Charles Moseley, who spoke by a telephone hookup to the hearing, said that while employment placements have increased, it appears those results have been achieved by community-based agencies acting independently of the consent decree. 

“The persons who have been placed have not been placed as a result of the budget but in spite of the budget,” Moseley said.

Like the judge, Moseley, Zeitler, and DeSisto each expressed their frustration with the lack of system-wide progress in implementing the consent decree, which has specific requirements and deadlines. 

Compliance is likely to come “late and piecemeal instead of on deadline,” said the DOJ’s Zeitler.

For example, she said, the consent decree required the state and the Providence School Department to help secure employmentbyJuly 1, 2015, of a total of  50 recent high school graduates who received special education. But so far, only 21 of them have been placed – less than half.

“Right now, we are at a bit of a crossroads,” Zeitler said.

The one bright spot cited during the hearing was appointment of Mary Madden as the secretary-level coordinator of the consent decree, with authority over the state agencies responsible for implementing its requirements. Madden was appointed at the end of January by Rhode Island Health and Human Services Secretary Elizabeth Roberts. Madden serves in an acting capacity.

 “I have a little ray of hope” that she’ll bring leadership to the state’s efforts, McConnell said.

Madden “in a short period of time has jumped into this,” Moseley said.

Madden, well known in the developmental disability community, is a policy fellow at the Paul V. Sherlock Center on Disabilities at Rhode Island College, where she has conducted research on public policy issues such as inclusion, employment, self-determination, and the design of systems of care and support.

A seasoned administrator with 30 years’ experience, she was president and CEO of the J. Arthur Trudeau Memorial Center from 2003 to 2012 and executive director of the Ocean State Association of Residential Resources from 1987 to 2003.

Madden is also owner of M-CUBED Consulting in Narragansett, which helps non-profit developmental disabilities organizations with strategic planning, program design, and team building. 

Judge to Consider Remedial Plan

 By Gina Macris

U.S. District Court Judge John J. McConnell, Jr. is poised to consider a remedial action plan to hasten Rhode Island’s compliance with a two- year-old federal consent decree requiring the state to provide community-based daytime services, including employment supports, to people with developmental disabilities.

The U.S. Department of Justice (DOJ) and the state have “jointly determined that, in order to facilitate compliance with the consent decree in this matter, the parties would benefit from a court ordered remedial action plan,” according to a proposed order filed with McConnell in Providence March 1.

 The judge is scheduled to hear the status of the case on Monday, March 14 in Providence, although a spokeswoman for the Court indicated March 8 that the hearing date may be rescheduled. (Update: March 14 at 10 a.m. confirmed as date and time) 

 The proposed Court order, along with a supporting joint motion submitted by the DOJ and the state, spell out a road map for the Court to proceed in considering the facts in the case over the next two months.

In a telephone conference Feb. 24 requested by the state, all sides agreed that three issues stand in the way of full compliance, according to the proposed order. The order and the supporting motion both cite money, the number of integrated, community-based placements, and leadership.

Both sides committed to compliance

"Both Plaintiff and Defendant remain committed to resolving the above listed issues and any other issues identified by the court," according to the joint motion, signed for the DOJ by Vanita Gupta, head of the civil rights division, and for the state by lawyer Marc DeSisto.

DeSisto and lawyers for the DOJ, as well as a Court monitor in the case, have told McConnell that the state budget does not now have enough money allocated to implement the consent decree. The monitor, Charles Moseley, also has said that if the state does not meet certain benchmarks now, it will not be able to comply with the final requirements of the order once the decade of federal oversight concludes in 2024. 

The joint motion and proposed order both call for an evidentiary hearing on April 18 that would require the appearance of the head of the state Office of Management and Budget as well as the directors of three agencies responsible for carrying out the consent decree: the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the Office of Rehabilitation Services (ORS) of the state Department of Human Services and the state Department of Education (RIDE). 

 A week before the hearing, the state would provide the judge with a written report on the status of compliance. During the hearing itself, “Defendant will provide the court with the information necessary to issue an order for remedial action to spur prompt compliance,” according to the proposed court order.

 The parties would reconvene May 2 so that the state can report on “progress relating to funding, placements, and the leadership required for full compliance,” as well as any other court order that may be outstanding at the time.

The monitor has sought the appointment of a secretary-level Consent Decree Coordinator who would have the authority to oversee compliance efforts of the three state agencies involved.   A secretary-level coordinator has been appointed only on an interim basis in recent weeks. 

RIDE is involved because it is responsible for providing transitional services, including school-to-work opportunities, for youth in special education as they approach their 21st birthday. These youth are of particular concern, according to the consent decree, because they are “at risk of entering sheltered workshops and facility-based day programs” when they reach adulthood.” 

Origins of the Consent Decree

The federal case started with a U.S. Department of Labor investigation into sub-minimum wages paid to people in one sheltered workshop. An expanded DOJ inquiry found that (Cut: found) teenagers and adults with developmental disabilities were being segregated from the general population in violation of the Americans with Disabilities Act (ADA).

The U.S. Supreme Court clarified the ADA’s mandate for integration in a landmark 1999 decision that many say struck down segregation for people with disabilities in the same sweeping way that Brown V. Board of Education banned “separate but equal” education for black students.

 The 2014 consent decree in Rhode Island, the first of its kind in the nation, spells out a series of specific deadlines for achieving an increasing number of supported job placements and individualized daytime activity plans over the 10-year period of federal oversight. 

Meanwhile, Governor Gina Raimondo has proposed a net increase of $8 million to the developmental disabilities budget now in place, with the total going from $229.7 million to $237.7 million for the period ending June 30. In the next fiscal year, developmental disabilities would receive a total of $235.2 million. 

Over the next 16 months, the governor’s plan would redirect more than $23 million within the developmental disabilities budget toward private agencies providing integrated daytime services. The state would create this financial boost largely by moving people out of group homes into shared living arrangements with families in communities throughout the state. 

This housing shift would involve 500 of 1300 people now in group homes moving into so-called shared living arrangements voluntarily by June 30, 2017, according to a BHDDH spokesman.  

Donna Martin, who represents an association of private agencies that support families offering shared living in their homes, has called the goal “very ambitious.”

RI Senate Committee Gets a Taste of Complex Federal Consent Decree

Charles Moseley, independent federal Court Monitor, left, and RI. Sen. Joshua Miller, D-Cranston and Warwick, chat after Feb. 25 briefing on federal consent decree requiring community integration of people with developmental disabilities. 

By Gina Macris 

Members of a Senate committee began to grapple with the complexities of a federal court case that has the potential to require the state to allocate millions of dollars to reform its services to Rhode Islanders with disabilities.

For an hour on Feb. 25, The Health and Human Services Committee was briefed about a federal consent decree that requires the state to give those with disabilities a chance to work and do other meaningful activities in the community.

 After the briefing, committee chairman Joshua Miller, D-Cranston and Warwick, said it wasn’t clear to him whether the state agency responsible for services to adults with developmental disabilities needed to reorganize, or whether a greater overall allocation is needed to comply with the consent decree.

“At any point will the decree require minimum funding?” Miller asked Charles Moseley, the independent Court Monitor in the federal case.

 Moseley replied that “the consent decree requires minimum funding now.”

Moseley said the “minimum funding” relates to activities necessary to achieve compliance, like an official to coordinate employment services, so that more people who need supports can get “up and working” in the community.

He gave other examples, saying that the key areas are employment and other meaningful non-work activities.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, presented statistics which show a smaller percentage of people with developmental disabilities were working in the community in 2015, a year after the consent decree was signed, than were in supported employment in 2011, the year the General Assembly enacted a 13 percent budget cut in services that support them.  

The employment figure decreased from about 23 percent to about 21 percent in four years’ time, according to Antosh’ figures.

“What has increased is the number of people who are essentially doing nothing” during the day, he said.

“Roughly 40 percent are 50 or over, and most of them have very little to do,” Antosh said.

Moseley said that “if the investment is not made now, (the goals) won’t be met in ten years,” the lifespan of the consent decree.

But Moseley did not provide Miller with a dollar amount. 

In a hearing before U.S. District Court Judge John J. McConnell Jan. 26, both Moseley and the lawyer for the U.S. Justice Department, Victoria Thomas, said flatly that the current state budget does not contain enough money to fulfill the requirements of the consent decree.

And a week later, Governor Gina Raimondo made the same categorical statement in her budget message to the General Assembly.

Raimondo’s budget proposal asks for an additional $8 million in in developmental disability funding funding in the current fiscal year, bringing the budget to $237.7 million by June 30. The increase is designed to shore up the developmental disabilities division in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

In the coming fiscal year, developmental disabilities would receive slightly less, $235.2 million under the governor's plan. However, the administration is proposing a way to sharply increase spending for community-based supports that are required by the consent decree without requesting another budget hike. Instead, the increase would be funded by savings that the administration hopes to achieve through major changes to residential programs, asking 500 adults with disabilities to move voluntarily from expensive group homes into shared living arrangements with families.

RI Senate President Favors Reforms in Developmental Disability System

By Gina Macris

  The time has come to reform the way Rhode Island supports people with disabilities, in particular by elevating the status of an underpaid workforce that provides direct care, the state Senate’s top leader says.

“This is a really an exciting and challenging time,” Sen. M. Teresa Paiva Weed, D-Newport, said Feb. 24, winding up a two-day conference at Rhode Island College that focused on strategies for attracting and retaining more highly skilled employees.

Paiva Weed said she was initially very concerned about a federal consent decree that requires Rhode Island to improve community integration of people with developmental disabilities, but “I have in my head decided that it offers an opportunity to transform our system if we all work together and meet the challenges.” 

Her show of support for developmental disability professionals comes at a critical legislative and legal juncture for Rhode Island. 

An independent Court Monitor said in January that the state has not allocated enough money to meet compliance goals spelled out in the consent decree, and the federal judge in the case indicated he is prepared to take further action to enforce the decree, if necessary. 

Paiva Weed noted that some people undervalue the care-taking workforce – and that those perceptions must change. 

“It’s okay to pay $25 an hour for somebody to throw paint on your wall,” the Senate president said. “But when you want to pay someone $15 an hour to care for people, everybody has a heart attack.”

 In Rhode Island, these workers earn roughly $11 an hour, on average.  

Paiva Weed said that a key Senate panel, the Committee on Health and Human Services, would get a briefing from the independent Court Monitor overseeing the state’s compliance with the consent decree the day after the conference, Feb. 25. The session was scheduled to start at 3 p.m. in the Senate Lounge. 

The Senate President said the legislature, the public, and even families of people with developmental disabilities need to be educated about what the consent decree means, reiterating one of the themes that had run through the conference.   

Paiva Weed said she has heard from constituents who are “very angry” with plans to fund community services largely by shifting residential costs from expensive group homes to shared living arrangements with individual families. About 500 of 1300 people living in group homes would move by June 30, 2017. 

“It’s a divided community,” she said. “Maybe some of it can happen through attrition. Maybe some of it can and some of it can’t,” she said, echoing doubts about the schedule for moving so many people in such a short time that were recently voiced by a spokeswoman for direct service agencies that oversee shared living. 

 “There are a lot of people who are huge advocates for you guys, but this is complicated and a lot of folks don’t understand how complicated this is,” the Senate President said.

Paiva Weed did not offer new suggestions about increasing the low pay of the developmental disability workforce, a key element in attracting and retaining employees.

Her guest appearance capped a series of brainstorming sessions that brought together state officials, community service providers, and a few family members of people with disabilities under the auspices of RIC’s Sherlock Center on Disabilities. 

In the end, the discussions gelled into concrete plans for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to launch a small model program on July 1 to showcase high quality training, effective supervision, and better wages for workers wo called direct support professionals.  

 Maria Montanaro, the BHDDH director, said it will require planning on an “aggressive schedule” to roll out a model program of best practices in developmental disability services by July 1, “but I think we can do it.”  Private agencies would apply to have their staff participate in the program.

 The program design must be completed by the end of March to allow time for approval by the state’s Executive Office of Health and Human Services, the legislature, and the federal Centers for Medicare and Medicaid Services, Montanaro said. 

Montanaro envisioned higher pay for workers in the pilot program, training that would lead to certification, and the use of smart devices to help people with developmental disabilities do a variety of tasks more independently and monitor them at critical times.

 At the same time, the BHDDH reimbursement rates to private agencies must be reconfigured, and regulations must be altered so that they do not collide with the planned innovations, said Andrew McQuaide, the department’s chief transformation officer.

 If the pilot program is successful, it could be implemented system-wide in 2018, he said. 

 An expert on implementing community-based services for people with developmental disabilities, Amy Hewitt of the University of Minnesota, advised the Rhode Islanders that any certification process should be voluntary if it is to succeed in the long run, suggesting that incentives and rewards work better than top-down rules.

 Questions remain about the details, including the use of technology. While proponents cited positive examples of smart devices that reduce the need for staff to watch routine activities or to provide reminders, one parent, Pam Goes, said she was concerned about the loss of privacy that might come with technology, such as TV monitors, even if they are only used part-time.   

Professional Workforce Key to Implementing Consent Decree in Rhode Island

By Gina Macris

Rhode Island faces a crisis in its inability to recruit and retain a high quality front-line workforce to support people with developmental disabilities. 

The problem - substandard working conditions and low pay in a poorly trained workforce plagued by high turnover - must be resolved if the state is to implement a landmark 2014 consent decree with the U.S. Department of Justice that requires dramatic changes in the way services are configured.  

That was the consensus Feb. 23 during the start of a two-day conference at Rhode Island College, where some 75 employers, researchers, state officials and family members brainstormed about how to jumpstart a new way of doing things – and getting the funding necessary to make it happen. 

Maria Montanaro, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH)  wondered aloud if her agency could shift funding in the short term to roll out a high-quality pilot program demonstrating the need for better funding of the entire system.                                                               

With perhaps a quarter of the state’s 20 private developmental disability providers participating, she said, the pilot program would offer better salaries and training to motivate staff to show ways that services can be changed to support individual needs rather fit people with developmental disabilities into existing programs.  

That change is a pivotal element in requirements of the Consent Decree that mandate individualized supports in community-based settings.    

Montanaro said a successful pilot program would yield research data that could be leveraged into advocacy for increased funding system-wide during the2017 General Assembly session.  Such a pilot program would not require legislation, she said.  

Montanaro responded to a presentation at Rhode Island College (RIC) by Amy Hewitt, a Minneapolis researcher with a national reputation in identifying effective practices for helping people with intellectual and developmental disabilities live and work in their communities. 

Hewitt, director of the Research and Training Center on Community Living at the Institute of Community Integration at the University of Minnesota, set the tone for discussing advocacy strategies that are based on research statistics gleaned in the implementation of new policies.  

She was hosted by her counterpart in Rhode Island, A. Anthony Antosh, director of RIC’s Sherlock Center on Disabilities, which is charged through the consent decree with showing the way toward greater community integration.  

Montanaro said, “We have to get the advocacy voice mobilized in Rhode Island” so that the message of the disability community gets to the legislature “in a cogent and compelling way.”  

She said she is in a position to speak to Governor Gina Raimondo, but in the executive branch, “they’re responding to the legislative temperament.”  

Governor Raimondo’s latest budget proposal, now before the legislature, asks for some additional funding for developmental disabilities. To a greater degree, however, it would shift residential supports from expensive group home care to less costly shared living arrangements in private homes and use the savings to support employment and other community-based activities.  

The state also could leverage additional Medicaid money in creative ways to provide community-based services, Montanaro said.  

Mary Madden, the state’s new interim Consent Decree Coordinator, noted that expanding the use of Medicaid money still would mean convincing the state to pay for half the new funding.  According to Medicaid rules, the federal government pays for about 50 percent of allowable services, as long as states pick up the other half.  

Hewitt, meanwhile, said legislation and litigation drive public policy, with lawmakers responding only when the the data backs up the argument for change.  

 “The happy stories are not going to get money,” she said. Policy makers don’t make decisions based on the “feel-good stuff. That’s the realist in me talking. They make decisions based on unmet need” that is supported by statistics.  

“We expect the direct service professional to be a little bit of everything,” Hewitt said, referring to the formal title of front-line worker.

The job encompasses the role of teacher, nurse, psychologist, occupational and physical therapist, counselor, nutritionist, chauffeur and personal trainer all at once, she said. 

Yet direct service professionals are paid an average of a little less than $11 an hour in Rhode Island, she said. 

“You have to figure out a way” of changing perceptions so that “these people are not thought of as workers but professionals,” she said.  

The workforce problem in the field of developmental disabilities runs nationwide, Hewitt said.  

“No state has solved this problem, but there are few states further along the path,” she said.  

Hewitt offered a myriad of statistics that link training, supportive supervision, and decent pay to a stable, high-quality workforce that makes a difference in the lives of people with developmental disabilities.  

She is to return Feb. 24 to serve as a resource as the group of about 75 works on specific strategies for stabilizing and improving the system in Rhode Island.  

The conference participants are mostly senior officials of the private agencies that provide services to almost all the 3600 people with developmental disabilities in Rhode Island.  No front-line staff attended.  

Pam Goes, the mother of an adult with developmental disabilities, said families need to be included in policy-making and advocacy statewide.  

“Right now families feel isolated and apart,” said Goes, who is also a former family support director at the Trudeau Center in Warwick.