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

tom Kane                         RI capitol tv Image

By Gina Macris 

This article has been updated. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

 DiBiasio       Photo by Anne Peters  

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

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

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

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

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

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

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

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

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

Jo-Ann DiBiasio Photo by Anne Peters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Former Nurse Pleads Guilty to Assaulting Developmentally Disabled Boy in RI

By Gina Macris

Kimberly Faneuf, 49, of Cumberland, RI, formerly a licensed practical nurse, pleaded guilty in RI Superior Court June 14 to one count of assault on a severely impaired person, a nine year-old boy with developmental disabilities who is prone to seizures.

After a plea agreement, reached with the approval of the victim’s family, Judge Netti C. Vogel sentenced Faneuf to five years in  prison with 18 months to serve, and the remainder suspended with probation, according to the office of Attorney General Peter F. Kilmartin. 

In addition, Vogel ordered Faneuf to perform 50 hours of community service, seek mental health counseling, and have no contact with the victim.

The state Department of Health stripped Faneuf of her nursing license shortly after she was arrested by Cranston police, nearly three years ago.

The parents of the boy, a Cranston couple, hired Faneuf to care for their son July 29, 2013, while they went out to a rare dinner alone, according to Kilmartin’s spokeswoman.

While they were at dinner, the couple checked in remotely with a camera they had placed in their son’s bedroom to monitor him in case of a seizure.

They saw an image of Faneuf “grabbing their son roughly, assaulting him, and tossing him on to his bed,” according to the spokeswoman for Kilmartin.

The couple rushed home, confronted Fanuef, and took their son to Hasbro Children’s Hospital, where doctors found a bruise on his arm, a bump on his head, and a blood spot in his left eye.

After her arrest, Faneuf  “offered no acceptable reasons for her behavior towards the boy, except to say she was overworked and tired, and admitted the care was ‘not up to standards’  that evening,” according to Kilmartin’s spokeswoman.

Kilmartin said of the case: “This young boy needed care and compassion, but in a fit of rage and anger, his caretaker physically assaulted him. As a professionally trained LPN, her actions are even more troubling. The developmentally disabled are among our most vulnerable population, often unable to report an assault or abuse. Had it not been for his loving parents installing a video camera to monitor their son’s health, this assault very well may not have been reported and this defendant free to assault more patients.”

More Money for Developmental Disability Services; Is it Enough to Satisfy the Court?

By Gina Macris

The Rhode Island House Finance Committee’s recommended budget for developmental disabilities could represent a glass half full or a glass half empty. 

Neither description is likely to satisfy the U.S. District Court, which recently issued an order saying, in effect, that the state must provide developmental disabilities programs a full glass.  

The House Finance Committee would give Governor Gina Raimondo most of what she asked for in the next fiscal year, including $5.1 million to raise the pay of direct care workers making poverty wages and another $4.1 million to restructure the way private service providers are reimbursed. 

But the recommended budget also is built on two iffy assumptions – that the developmental disability agency will be able to save $6.4 million in housing costs and that the caseload will remain the same, with about 4,000 people receiving services. Raimondo’s budget asked for a $5.8 million increase for 100 new cases. 

If either assumption misses the mark, there might not be enough money in the budget to shore up the private service providers, putting at risk at least some of a total of $9.1 million set aside for the raises the service providers want and performance-based contracts the state wants in order to restructure the way it reimburses the private agencies and satisfy part of the U.S. District Court order. 

All of the Governor’s request – a total of  $16.9 million in added federal and state Medicaid revenue-  is needed to correct chronic underfunding in the budget of the Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH), the department director, Maria Montanaro, told the House Finance Committee in a recent hearing.

 For the last eight fiscal years, including the current one, the bills BHDDH gets from service providers have exceeded budgeted amounts, Montanaro said. 

Raimondo sought to protect wage increases by specifying in her original proposal that $2.5 million of general revenue “shall be expended on private provider Direct Support Staff raises” in the next fiscal year. That sum would be matched by federal Medicaid dollars for a total of $5.1 million that would pay for 45-cent hourly wage increases.

 The protective language around the $2.5 million in state revenue has disappeared from the House Finance Committee’s recommendation. 

With the protective language gone, there could be a replay of the current budget, in which $4 million was originally set aside to boost workers’ pay but never made it into their pockets, going instead to help narrow a hole in the budget. 

Raimondo herself is counting on the first assumption, that BHDDH will save $6.4 million in the next fiscal year by convincing group home residents that they would be happier living with able-bodied housemates in private homes in the community. These are called shared living arrangements. Simply relocating people would run counter to federal law.

The $6.4 million in savings represents a fraction of Raimondo’s original estimate. In February, when she first released her budget for the 2017 fiscal year, she proposed saving $16.6 million by moving 400 group home residents to shared living in 12 months’ time. The House Finance Committee agreed with her subsequent request to restore $10.2 million of that total. 

The prospects of achieving even $6.4 million in savings are not strong if the efforts of the past six months are any indication.  What BHDDH director  Montanaro describes as a “full court press” to increase the number of shared living arrangements in the second half of the current fiscal year has yielded results that are about the same as the first half. There were 11 new shared living arrangements from July to December of 2015 and 10 new placements since January.

The governor’s budget proposal called for $3.5 million in group home savings during the current fiscal year with 100 new shared living arrangements,  but the actual savings will be more like $200,000, Montanaro told the Senate Finance Committee at the end of April.  

The House Finance Committee’s recommended budget acknowledges this development by adding $3.5 million back into to the department’s supplemental appropriation for the current fiscal period, which ends June 30. 

While approving major elements of the governor’s developmental disabilities budget proposal, the House Finance Committee rejected a $5.8-million request to cover an estimated caseload increase of 100 in the coming fiscal year, saying that the developmental disability caseload has been stable at about 4,000. 

Yet there is a backlog of about 240 individuals who have applied for an eligibility determination, according to a BHDDH spokeswoman. Two thirds of them are under the age of 21, according to another BHDDH official. That would mean that roughly 80 are over 21.   

And the numbers of young adults with developmental disabilities who are turning 21 and leaving school - 74 in the current academic year alone – suggest that the caseload should be growing. 

Persons with developmental disabilities between the ages of 14 and 21, who are at risk of segregation as adults, are one of the main concerns of the U.S. Department of Justice in enforcing a 2014 consent decree requiring community-based adult services, with an emphasis on supported employment. 

The consent decree, in effect until Jan. 1, 2024, resulted from a DOJ investigation that found the state’s sheltered workshops and segregated day centers for adults with disabilities violated the integration mandate of the Americans With Disabilities Act (ADA), which was clarified in the 1999 Olmstead decision of the U.S. Supreme Court.. 

In a hearing in April in U.S. District Court, the DOJ presented evidence that BHDDH does not determine eligibility until a few months before an applicant turns 21. 

State law says that persons with developmental or intellectual disabilities are eligible for services when they turn 18. 

Newly eligible young adults and their families often have trouble finding appropriate services, according to the evidence presented in court.  

Many of the two dozen private service providers in the state are not accepting new clients because they say they are operating at a deficit.  Montanaro has confirmed that assertion, telling the House Finance Committee recently that the private agencies have opened their books to BHDDH. 

With the federal court case continuing under terms of a judge’s order, there is likely to be pressure on the state to make sure that all applicants for adult services get timely consideration and an appropriate array of supports, a factor that could push up the caseload numbers. 

In its budget recommendation, the House Finance Committee said it would reconsider its refusal of a caseload increase if the numbers do go up. 

It is possible that decision was at least partly influenced by frustration in the House leadership with a history of poor record-keeping at BHDDH, something that also has worked against the department in the U.S. District Court case. 

The House Finance budget added extensive language requiring BHDDH to report monthly on a variety of statistics, including everything submitted to the court as part of the consent decree requirements. 

After the court experienced delays in getting an accurate count of individuals protected by the consent decree, Judge John J. McConnell issued an order May 18 that requires the state “to create a live database that will allow for efficient and effective tracking of each member of each target population outlined in the Consent Decree and all related and required services and outcomes.” The order then describes all the reporting requirements in extensive detail. 

In all, the order contains 22 requirements, most of them with deadlines in July and August. In the event of a violation of any part of the order, the DOJ or an independent court monitor in the case could ask McConnell for a show-cause hearing as to why the state should not be held in contempt. Fines start at $1,000 a day and max out at a total of $1 million for the year.

The first requirement of the order is that “the State will appropriate the additional money contained in the Governor’s budget for fiscal year 2017 in order to fund compliance with the Consent Decree.” No dollar amount is cited.  

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

Photo by Anne Peters

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

By Gina Macris

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

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

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

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

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

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

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

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

Photo by Anne Peters 

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

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

Efforts to get additional information from BHDDH were unsuccessful Wednesday.

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

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

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

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

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

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

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

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

Photo by Anne Peters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI Families Blast Consent Decree and DD Services

By Gina Macris

Officials of Rhode Island’s developmental disability system hit blowback Wednesday from family members who oppose a 2014 federal consent decree that requires the state to move from sheltered workshops and segregated day programs to community-based work and leisure activities.

Debra Feller

Debra Feller, whose son has developmental disabilities, challenged the basis of the decree, saying it is contrary to the very law on which it is based, the Americans With Disabilities Act (ADA), by limiting, rather than expanding, opportunities for employment.

The decree, “violates the ADA“ for people like her son, who cannothandle outside employment, Feller said. She also contended that“sheltered workshops are being allowed to deteriorate at the expense of the consent decree.”

Michael Carroll, who works at a day facility in Middletown run by the James L. Maher Center of Newport, mocked a consent decree mandate that the state help adults with disabilities find and keep jobs in the community.

“The emperor has no clothes,” Carroll declared. “These jobs don’t exist. What happens then?”

The “same individuals who were working before at subminimum wage are now doing nothing,” Carroll said.

Their comments came during  a two-hour “town hall” meeting at the Buttonwoods Community Center on West Shore Road in Warwick, where about 100 consumers, their families and state officials discussed both the philosophical as well as the practical underpinnings of the consent decree.

The decree was signed after the U.S. Department of Justice found Rhode Island violated Title II of the ADA because it unnecessarily segregated adults with developmental disabilities in day programs or workshops that paid sub-minimum wage.

Title II of the ADA, underscored by the 1999 Olmstead decision of the U.S. Supreme Court, says that services must be provided to individuals with developmental or intellectual disabilities in the least restrictive setting that is appropriate.

Maria Montanaro, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), was to lead the session in Warwick, but she was ill Wednesday. Other BHDDH officials, including Andrew McQuaide, chief transformation officer, and Charles Williams, director of the Division of Developmental Disabilities, responded to the comments.

Thee sister of a man who is significantly impaired said the employment mandate of the consent decree was being carried out to an illogical extreme, at least in her brother’s case.

Lidia Goodinson said her brother is 56 years old and “doesn’t know the concept of work. ““Nobody would expect a two year-old to go out and get a job,” she said.

And yet her brother’s social worker told her that “to get funding, he has to look for work.”

Williams, of BHDDH, said, “Your response is to say that ‘I don’t believe he can work.’ “

Goodinson, however, said she did make herself clear. Nevertheless, the social worker said, “This is what the state requires,” according to Goodinson.

Williams asked Goodinson to give him the name of the social worker after the meeting.  

When Debra Feller asked whether “a sheltered workshop is a reasonable or appropriate environment for anybody,” the BHDDH transformation chief, McQuaide, said:  “The consent decree says it is not.”

McQuaide said there are many individuals with developmental disabilities who can and want to work in the community but can’t access the supports they need. The consent decree is designed to give them that choice.

“Nobody’s arguing about that,” Feller replied, but individuals like her son “can’t be left out of the conversation, either.”

The government is “stepping on their rights by saying they can’t be in a sheltered workshop,” Feller said. The audience applauded her remarks.

 McQuaide said the Department of Justice will say the consent decree “does not close sheltered workshops, but effectively it does.”

He said the state still has sheltered workshops, but at some time in the future, the state will no longer fund those.

He agreed with Feller that a sheltered workshop can provide space for a meaningful activity and foster long-lasting relationships, but he said those same meaningful relationships and activities can occur in the community.

As to Michael Carroll’s challenge that community-based jobs don’t exist, McQuaide said the employment targets in the consent decree are not “so astronomical” as to be difficult to achieve.

McQuaide scotched a rumor that the consent decree requires the state to close all segregated day facilities.

One center in Bristol is closing because its neighbor, Roger Williams University, wants to buy the property and the state has agreed to sell it, McQuaide said.  He said some of the people who attend that program will go to the Middletown center operated by the Maher Center and others will have community-based day programs.

McQuaide, after hearing the comments during the town meeting, said that “we have to do a much better job communicating about the consent decree.”  He offered to give Feller contact information for DOJ lawyers.

At the very least, the families’ comments underlined a gap between the promise of the consent decree and its day-to-day implementation in a service system hindered by poverty-level wages for professional staff workers and restrictive rules that prohibit flexibility and innovation.

Between 2008 and 2011, funding for developmental disability services was cut 20 percent, according to statistics presented in February to the state Senate Committee on Health and Human Services by the director of the Sherlock Center on Disabilities at Rhode Island College.  

A. Anthony Antosh said a smaller percentage of individuals with developmental disabilities had community-based jobs in 2015, a year after the consent decree was signed, than had been employed earlier at minimum wage or higher.  

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

After the consent decree was signed in 2014, sheltered workshops began closing abruptly under pressure from a previous BHDDH administration. Private agencies strapped for cash had no alternative programs already in place to support their clients in the transition to work and leisure activities in their communities.

At the Buttonwoods Community Center on Wednesday, BHDDH's Williams touched a nerve when he told parents they needed to be frank about their loved ones’ support needs during a periodic assessment called the Supports Intensity Scale (SIS).

Debra Feller said she was direct but “the SIS intake person refused to accept my answer,” a comment which again drew applause from the audience.

“I asked, ‘How long before I get this back?’ “ she said.  The BHDDH worker told her she didn’t know, “because I didn’t answer the questions the way she wanted,” Feller said.

The Department of Justice found that that the SIS was being used improperly as a funding mechanism. The multiple choice questionnaire was developed by the American Association of Intellectual and Developmental Disabilities as a guide in defining the supports necessary to help a particular person achieve his or her individualized goals.

The consent decree requires an outside health consulting firm to do an annual analysis of the way BHDDH uses the SIS and to submit the report to the independent court monitor in the case.

Devlin Allen, who hosts a man with developmental disabilities as a shared living provider, said that after a recent SIS, his client’s funding was cut by $8,000 a year, a 24 percent cut in reimbursement, which makes it “very difficult to maintain that  person in my home.” 

“They’re cutting the funding because we’re doing a good job with an individual,” he said. The SIS should take into account that if the supports are removed, a client’s level of need will increase, he said.

Williams told Allen to file an appeal. Almost all, if not all, appeals are granted, Williams said.

In closing, McQuaide said Montanaro, the department director, would reschedule her appearance for sometime in May. 

Funding Shift in RI Developmental Disabilities Budget Falling Far Short of Goal

By Gina Macris

Rhode Island Governor Gina Raimondo’s strategy for funding federally-mandated reforms to developmental disability services is in trouble, according to updated figures that emerged in a Senate Finance committee hearing Tuesday. 

Raimondo’s proposed budget puts an overall price tag of $24.1 million on expanded community-based services funded through the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) over the next 14 months to satisfy a first-in-the-nation consent decree designed to correct violations of the Americans with Disabilities Act (ADA).

        MARIA MONTANARO

The BHDDH budget plan relies on a total of $19.3 million savings in group home costs to pay for most of that $24 million bill, but the actual savings are materializing at a trickle. BHDDH director Maria Montanaro told the Senate Finance Committee only $200,000 in reductions are expected by the end of the current fiscal year June 30.

The $200,000 savings comes from an increase of 21 individuals who have moved from costly group home care to less expensive shared living arrangements since the start of the current fiscal year July 1, 2015, a BHDDH spokeswoman said Wednesday. In the last ten months, the total number of individuals in shared living has risen from 267 to 288. BHDDH had projected 100 new additions to shared living by June 30 of this year and 200 more in the next budget.

The $200,000 in savings is less than a tenth of the $3.1 million in housing cost reductions that BHDDH had hoped to realize in the current budget. 

The figures raise big questions about a huge revenue gap in Raimondo’s plan, which is due for its next review in U.S. District Court Monday, May 2 at 1:30 p.m. before Judge John J. McConnell, Jr. The state faces contempt proceedings and fines if it fails to adequately finance supported employment and other community-based services as required by the consent decree.

On Tuesday, the gap between projected and actual savings in the BHDDH budget caught the attention of Sen. Louis DiPalma,  (D-Newport, Middletown, Tiverton and Little Compton), who chaired the hearing.

DiPalma questioned Montanaro sharply.

“What are we doing about achieving $16.2 million?” he asked Montanaro, referring to the lion’s share of the $19.3 million cut in group home costs that is projected for the next fiscal year. 

First Montanaro said it is possible BHDDH will meet the targeted $16.2 million in savings as more individuals move into shared living.

“The pace will be slow,” she said. Shared living is “a completely voluntary activity.” Families are making a decision about something that is “a new concept and a scary concept.”

“With that said, I believe the target for (fiscal) 2017 will be realistic,” Montanaro said.

The goal may be possible, DiPalma said, “but the probability is zero.”

Exacerbating the financial situation at BHDDH is the short-term failure of a plan to shift a total of $4.4 million in professional services like physical and occupational therapy out of the BHDDH budget to Medicaid Managed Care. After BHDDH officials sent out letters in February telling clients to seek reimbursement directly from Medicaid, the Division of Developmental Disabilities received numerous complaints that individuals were, in fact, being denied services.

BHDDH rescinded the move in a subsequent letter of apology sent to consumers and families, at the same time nullifying planned savings of $2.2 million through June 30. Christopher Feisthamel, chief financial officer of BHDDH, said after the hearing Tuesday that the Executive Office of Health and Human Services (EOHSS) hopes to eliminate some of the bureaucratic hurdles that stand in the way of that cost-shifting during the next fiscal year. He could not be more specific.

DiPalma, meanwhile, indicated after Tuesday’s budget hearing that legislators will have a clearer idea of where BHDDH stands after the May revenue estimating conference, which concludes May 9. At the twice-yearly conference, the top fiscal officers for the governor and each legislative branch reach consensus on estimates for state revenue and caseload expenditures that are used in final budget deliberations.

Montanaro’s testimony put the shift toward shared living in a philosophical and budgetary context.

The single underlying principle of the Rhode Island consent decree and similar settlements in other states is that the “state should try very hard to move to the most inclusive, community-based system possible,” she said. Supported housing and shared living is part of that movement, she said.

“It’s not going to happen overnight,” Montanaro said.

At the same time, “we are faced with a targeted goal from OMB (the state Office of Management and Budget). There are very few places we can go to make those cuts,” Montanaro said.

Seven years of rate cuts to the private agencies that provide most of the developmental disability services in Rhode Island “have dramatically weakened the system,” she said. These funding reductions “have left clients very vulnerable.”

After a devastating cut of more than $24 million in the 2011-2012 fiscal year, the General Assembly has added a total of $18 million to the Division of Developmental Disabilities in succeeding budgets, but none of that money has reached the private service providers, according to Tom Kane, CEO of Access Point RI.

Instead, the money repeatedly has gone into plugging a structural hole in the BHDDH budget, he said.

Kane warned that if a $5.2 million supplemental increase to the current budget is not carried forward to the next fiscal year, the structural deficit will continue and the money Raimondo has set aside to shore up the private agencies will once again be diverted, threatening the stability of the entire service system. 

Earlier this month, Kane told a House Finance subcommittee that the private agencies operate at a loss of $5,700 a year for each person they employ, because the state does not cover the full amount of employer-related taxes and benefits.

On Tuesday, he indicated that said that if the agencies are forced to continue operating in the red, “there will be fewer of us next year.”

The General Assembly must “stabilize the system,” Kane said. 

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.

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.  

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.” 

Will the Budget Pass Muster with the Judge in Disabilities Case?

By Gina Macris

When Rhode Island Governor Gina Raimondo proposes a new state budget on Tuesday, Feb.
2, U.S. District Court Judge John J. McConnell, Jr. will be watching to see how the state plans to keep its promise to reform employment opportunities and other daytime services for people with disabilities.

 Rhode Island isn’t spending enough money to meet the deadlines set out in two and three-year-old consent decrees reached in landmark cases involving the Americans with Disabilities Act (ADA).

 And an independent Court monitor overseeing the state’s efforts has said that if Rhode Island doesn’t meet certain benchmarks now, it will be unable to accomplish long-term goals at the end of the decade-long federal supervision spelled out in the consent decree.  

 But at a hearing Jan. 26, a state lawyer told McConnell that Raimondo’s budget would be a “game changer” in advancing Rhode Island’s response to the mandates.

 An internal committee of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) tasked with redesigning services for people with developmental disabilities recommended $36 million in reforms last May,  but in an interview last Friday, a BHDDH spokesman said it is “very unlikely” that sum might appear in the governor’s proposal. 

If the Governor’s proposal falls short of McConnell’s expectations, it could set the scene for some courtroom drama during the upcoming months of budget deliberations at the State House.

The Court has the power to find the state in contempt – if it comes to that – and McConnell made it clear on Jan. 26 that he would not hesitate to use his authority if it is necessary. But said he hoped to avoid it.

 Let’s follow the case and the money at the heart of the issue before the Court.

The case surfaced in 2013 with a consent decree between the U.S. Department of Justice and the City of Providence over Providence teenagers with developmental disabilities, who had been segregated in a program called the Harold A. Birch Vocational School. Birch prepared them for a lifetime of rote assembly-line jobs –at sub-minimum wage – in a sheltered workshop for adults at an agency called Training Through Placement in adjoining North Providence.

 The 2013 settlement – the first of its kind in the nation - asserted the young people’s right to receive services to support them in employment and day activities in more integrated, community-based settings in accordance with the Americans with Disabilities Act.

 "The Supreme Court made clear over a decade ago (in the so-called Olmstead decision of 1999) that unnecessary segregation of people with disabilities is discriminatory. Such segregation is impermissible in any state or local government program, whether it be residential services, employment services or other programs,” a U.S. Justice Department spokeswoman said at the time.

A year later, in June, 2014, the Justice Department’s Civil Rights Division reached a statewide agreement with then-Governor Lincoln Chafee which mirrored the Providence settlement.

Today, 31 percent of Birch graduates are employed in community-based settings – up from 14 percent six months ago – but those numbers fall far short of the mandated goal of 100 percent, according to the independent Court monitor, Charles Moseley, whose oversight continues through 2024. 

 He and a Justice Department lawyer, Victoria Thomas, each laid out a laundry list of other deficiencies in the Jan. 26 hearing before McConnell, who said he wanted to see the parties before him again in three months. 

 Now to the money:

 In the fiscal year that ended June 30, 2005, Rhode Island paid $187.3 million in state and federal dollars to private agencies providing services to Rhode Islanders with intellectual disabilities, according to state figures. Currently, the state allocates $188.4 million to those services.  It’s all Medicaid money, with the state providing 45 cents on the dollar and the federal government paying the rest, according to the BHDDH spokesman.  

In the meantime, the number of people reaching adulthood with developmental disabilities has been increasing. The current annual rate is about 100, and the average yearly cost of supporting one person is $55,000. 

 From 2005 through fiscal 2008, the DD budget rose to $215.3 million. But as the shockwaves of the 2008 economic crash reverberated, the budget shrank, as did DD allocations in other states.

 While some other states started restoring money to DD services, Rhode Island slashed further.

 For the fiscal year ending June 30, 2012, the Rhode Island General Assembly chopped nearly $26.5 million off the allocation, reducing it from $206.5 million to just under $180 million. That’s a cut of 12.8 percent in one year.

And BHDDH put in place a reimbursement system that does not cover all the services that agencies provide during daytime activities – only face-to-face contact with clients. The legwork necessary to set up job interviews or community activities, for example, is excluded. This arrangement “incentivized” the segregation of people with developmental disabilities in sheltered workshops and day facilities, Thomas, the Justice department lawyer, told McConnell on Jan. 26.

 Even though the BHDDH administration changed with the inauguration of Raimondo as Governor in 2015, the reimbursement system remains in place. Moreover, BHDDH allows agencies to collect the money owed for daytime supports only through a burdensome reporting process that requires documenting each worker’s time in 15-minute blocks, for each client. If a client is sick, the agency does not get its client-specific incremental payment for that day.   

Since 2011,  private nonprofit providers have cut workers’ pay to an average of $11 an hour, staff turnover has skyrocketed, and two agencies have closed their doors.

 In an interview on Friday, the BHDDH spokesman, Andrew J. McQuaide, acknowledged that satisfying the mandate for integration “fundamentally costs more than the system we have now.” He agreed that the system is geared toward “congregate centers for day programs and employment.”  Service providers should be held accountable, though, said McQuaide, the department’s new Chief Transformation Officer.

 Last October, Maria Montanaro, the BHDDH director, told a group of parents that the $36 million in redesign recommendations had been tabled because of the cost.

 On Friday, McQuaide said it’s “very unlikely” the $36 million in reforms would re-surface in the Governor’s budget proposal. 

“I’m unaware of anyone who thinks the state can afford to increase the DD funding by $36 million in a single year,” he said. “It would be unprecedented in a single fiscal year.”

“The question becomes how to sequence this,” McQuaide said.

 He said he couldn’t speculate on how the court will react.

 “There’s no way of knowing what would please the court,” he said. But “at the end of the day I am optimistic we will move in the right direction.”