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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tim Vogt, Emerging Leader in Building Inclusive Communities, To Speak in Rhode Island Nov. 3

Tim Vogt Photo courtesy of Tim Vogt

Tim Vogt Photo courtesy of Tim Vogt

Registration information has been corrected.

By Gina Macris

Tim Vogt, a nationally-recognized expert in building inclusive communities, will speak at a free seminar in Rhode Island November 3 that will be sponsored by several organizations that advocate for Rhode Islanders with intellectual and developmental disabilities and their families.

Vogt is executive director of Starfire in Cincinnati, Ohio, where he has developed ways of making connections among individuals that rely on mutual interests and collective strengths while working around disabilities.

“His visionary message is to maximize the positive; minimize the negative,” said Connie Susa, executive director of PLAN RI, one of the sponsoring organizations. Vogt blogs at https://cincibility.wordpress.com/

The November 3 seminar will be at the Dean’s List Academy, 25 Esten Ave., Pawtucket. Check-in will begin at 9 a.m., with the presentation scheduled from 9:30 to 12:30. Anyone planning to attend is asked to register in advance at https://www.eventbrite.com/e/claiming-a-corner-of-community-tickets-51383200536  Additional sponsors are RI FORCE, the Rhode Island Developmental Disabilities Council and the John E. Fogarty Foundation.

The Community Provider Network of Rhode Island, a trade association representing two dozen private organizations that serve adults with developmental disabilities, is a co-sponsor of Vogt’s visit to Rhode Island, Susa said.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI Direct Care Workers To See Raises in October Paychecks; Legislator Says They Deserve More

By Gina Macris

Raises for direct care workers in Rhode Island, including those who serve persons with developmental disabilities, are scheduled to show up in paychecks in October. But the increases are unlikely to fix problems caused by wages that many consider inadequate to stabilize a workforce plagued by high turnover, high vacancy rates, and high overtime. 

Even after receiving the pay hike, many workers will be forced to continue working second jobs to make ends meet.

Meanwhile, their employers will still have to scramble to fill vacancies, as Massachusetts prepares to pay $15 an hour for the same work beginning July 1, 2018.  Currently, one in six jobs goes unfilled, driving up overtime costs for developmental disability providers, according to the Community Provider Network of Rhode Island, (CPNRI), a trade association.  

Those who work with adults with developmental disabilities in Rhode Island make an average of $11.14 an hour, and an estimated increase of 42 cents would bring that hourly rate to $11.56. The exact increase is expected to vary from one agency to another, depending on benefits offered.

Unless the workers are single adults supporting only themselves, $11.56 an hour is not enough for a minimum subsistence wage – no restaurant meals, entertainment or savings accounts - that nevertheless avoids food stamps or other public assistance, according to the Living Wage Calculator at the Massachusetts Institute of Technology.

In Rhode Island, 41 percent of those working with adults with developmental disabilities have taken more than one job to make ends meet, according to CPNRI. The trade associaation presented figues to the General Assembly earlier this year that show 65 percent of direct care workers were heads of household in 2014, and 48 percent of them received public assistance between 2011 and 2013, the latest period for which data was available.

Entry-level positions for direct care positions at developmental disability service agencies generally hover a little above the minimum wage, currently $9.60 an hour. But the minimum wage is to get a 50-cent bump to $10.10 on Jan. 1 and another increase, to $10.50 an hour, on Jan. 1, 2019.

 In the current budget, $6.1 million in federal-state Medicaid dollars have been set aside for raises for those who provide direct care to adults with developmental disabilities, effective July 1.

Governor Raimondo also asked for a total of $5.2 million for increasing the pay of home health care aides, but the General Assembly delayed implementation of that raise until Oct. 1. House spokesman Larry Berman said that the way a similar increase was paid out to home care workers in 2016 made implementation problematic prior to Oct. 1 of the budget year and that issue was taken into account this year. The delayed implementation also saves more than $600,000 in state funds.  

Developmental disability service agencies also can expect to see higher reimbursement rates Oct. 1, but those increases will be retroactive to July 1, in accordance with language in the budget.

State Sen. Louis DiPalma, D-Middletown, who has led a call for improving the prospects of direct care workers, agreed that the direct care workers are treading water, in effect, relative to the minimum wage.  

He said he is well aware that raises enacted in 2016 and 2017 are not enough to compensate them for complex work that is often also physically demanding.

The new Amazon warehouse in Fall River is paying more than $12 an hour to start, he said.

In the fall of 2016, DiPalma launched a “15 in 5” campaign to increase pay of home health care aides and direct care workers to $15 an hour in five years – by July 1, 2021.

There appears to be broad sentiment in the legislature that direct care workers deserve better, judging from the number of bills introduced in the General Assembly earlier this year to speed up the climb to a $15 hourly rate. One measure, sponsored by the House Deputy Majority Leader, Rep. Jean Philippe Barros, D-Pawtucket, would have set Jan. 1 as the implementation date for a $15 hourly wage.

But the bills appear to have been more a gesture more than anything else.

DiPalma, first vice-chairman of the Senate Finance Committee, said that the state’s finances cannot support that kind of a boost immediately.

The state faces the prospect of a $237 million deficit in the fiscal year that begins next July 1, according recent memos from the State Budget Officer, Thomas Mullaney, and the Senate Fiscal Advisor, Stephen Whitney. And that estimateddeficit does not include $25 million in unspecified savings which the state still must trim from the current budget. Jonathan Womer, Director of the Office of Management and Budget,  has expressed skepticism that all the cost-cutting assumptions in the enacted budget can be achieved.

Department heads preparing for the next budget cycle are being asked to cut expenditures by 10 percent, with one exception being entitlement programs, like the federal-state Medicaid program, which funds the pay for home health care aides and developmental disability workers, among many other services. 

DD Supported Employment Program, Scheduled for Court Review, Falls Short of Initial Goals in RI

Source: PCSEP (Person-Centered Supported Employment Program) progress report - RIBHDDH - June 28, 2017

Source: PCSEP (Person-Centered Supported Employment Program) progress report - RIBHDDH - June 28, 2017

By Gina Macris

Rhode Island is struggling to move persons with developmental disabilities into productive jobs as envisioned in a federal consent decree reached with the U.S. Department of Justice three years ago, according to information obtained by Developmental Disability News.

A state report on the first six months’ operation of a pilot program to promote supported employment shows under-utilization of available funds and a job placement rate that falls far short of the state’s own goals.

The report, prepared by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, was obtained by Developmental Disability News.

Meanwhile, providers of services to persons with disabilities have told a federal court monitor and lawyers for the U.S. Department of Justice (DOJ) that they operate at a loss for the employment-related services they offer to clients enrolled in the individualized program, according to three sources familiar with the meeting.  

The primary reason is that the program does not pay the full cost of the services. That complaint was first registered when the parameters of the program were disclosed last winter.

In a meeting with the monitor and DOJ lawyers July 10, the providers also said they have inexplicably encountered problems billing for non-work services which are still needed by clients of the supported employment program.

Donna Martin, executive director of the Community Provider Network of Rhode Island, a trade association of developmental disability service agencies, confirmed that providers told the monitor and the DOJ that funds for the non-work services were “frozen.”

In an interview July 18, she said that the problem may be a computer glitch; an unintended consequence of the state’s efforts to track private providers’ billing for the supported employment program.

Martin said that Kerri Zanchi, the director of the Division of Developmental Disabilities at BHDDH, who inherited the administration of the supported employment program when she was appointed in late January, will meet with providers later this week to discuss a solution to the billing problem.

The problems outlined at the July 10 meeting and in the state’s progress report come in advance of the latest hearing in U.S. District Court, scheduled for July 28, as the court continues to track the state’s compliance with a 2014 federal consent decree.

That consent agreement requires the state to move away from over-reliance on sheltered workshops, by helping persons with developmental disabilities participate in integrated, community-based activities. The decree emphasizes jobs paying at least the minimum wage.

The state’s progress report on the supported employment program says there were 82 job placements between January and June 15, falling well below the pace necessary to achieve a self-imposed goal of 396 new jobs by the end of the calendar year. Of 513 client spaces available, 123, or 24 percent, are vacant, according to the report.

The report indicates that the program has spent far below the $6.8 million authorized by the General Assembly for the fiscal year that ended June 30, even taking into account the fact that the program wasn’t ready to accept clients until January, mid-way through the fiscal year.

The report says the state has made a total of $122,313 in performance payments for the training of job coaches, job placements, and job retention benchmarks. At the current rate, the report says the program will have paid out $390,000 in incentives by the end of the calendar year, far short of a total of $1.4 million set aside for that purpose during the first 12 months of operation.  

The report does not say how much of the $6.8 million has been set aside for providing job-related services, or how much providers have billed for these services, albeit at the same rates they would have been paid if the clients had not been enrolled in the special program.

Martin said that, as she understands it, there is usually flexibility between work and non-work categories in funding allocations for individual clients eligible for daytime services, so that an agency that provides more supports in one category during a particular month may draw on the funding for the other category as long as the billing does not exceed the total allocation for the quarter.

However, providers told the federal court’s monitor, Charles Moseley, and the DOJ that for clients of the supported employment program, there is no flexibility in the individual funding authorizations. In other words, if a client runs out of funds designated for non-work activities, the provider may not bill against the supported employment category. That money remains on the client’s account, but it is inaccessible, Martin said, explaining her understanding of the billing problem.

The DOJ, the monitor, and BHDDH all declined comment. A BHDDH spokeswoman said that information the department is compiling for the July 28 federal court hearing has not been finalized and could not be shared in advance with the media. Expenditures for the fiscal year that ended June 30 also have not been finalized, the spokeswoman said.

The federal officials also were preparing for the upcoming hearing when they hosted the July 10 meeting with providers. A four-page agenda prepared for that meeting, obtained by Developmental Disability News, asks providers to weigh in about all aspects of the program, including funding methods, as well as integrated non-work services.

The agenda indicates that the federal officials are particularly concerned that young adults with developmental disabilities – a group prioritized by the consent decree – are under-represented among 388 clients of the supported employment program.

Of 388 adults with developmental disabilities enrolled in the pilot employment program, only 87, or 22 percent, are young adults who have left high school since Jan. 1, 2013, according to the agenda.

At the same time, those 87 individuals represent less than 17 percent of the young adult category protected by the consent decree - 526 persons at last count. In all, the decree covers more than 3400 teenagers and adults of all ages, with the number updated quarterly.

Of three dozen private service providers operating in the state, 22 signed up for the supported employment program. Three of the 22 agencies have made no placements and another 7 have each made one placement from January through June 15. Two agencies have made 31 of the 87 job placements described in the report. The agencies are not identified by name but by letters of the alphabet.

The supported employment program offers bonuses to service providers who achieve goals in staff training, job placement and job retention, but it does not address an underlying problem of the state's low reimbursement rates to providers. The agencies, in turn,  pay their employees what are considered  depressed wages – an average of $11.14 an hour. These low wages have resulted in high rates of turnover and job vacancy, as well as high overtime costs to meet health and safety staffing requirements, and perpetual training of new hires.

While the supported employment program pays stipends once agency workers have completed a certificate program for job developers and job coaches, it does not pay the up-front costs of hiring and basic training for these workers, or other expenses associated with an agency’s capacity to find jobs for its clients.

Martin said that at the outset, providers hoped that the state would invest half the $6.8 million allocation for supported employment in start-up costs to help agencies expand their services, but instead the state put all the emphasis on performance payments.

Supported employment and related issues are likely to come up at the hearing before Judge John J. McConnell, Jr. on July 28 at 10 a.m.

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

By Gina Macris

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

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

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

Einloth                                                             photo by anne peters

Einloth                                                             photo by anne peters

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

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

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

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

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

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

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

O'Donnell          Photo by anne peters 

O'Donnell          Photo by anne peters 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 

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  

 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

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 

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.) 

Task Force Members Say Interviews to Assess DD Needs in RI Apparently Used to Cut Funds

By Gina Macris

Four Rhode Islanders with developmental disabilities who all need nearly constant attention have had their residential funding cut by a total of about $125,000 a year.

The most recent scoring on an extensive questionnaire that is supposed to assess their support needs says they have become much more self-sufficient. Instead of having extensive needs, they now require only moderate supports, according to the results of the questionnaire, the Supports Intensity Scale, or SIS. 

But Tom Kane, the CEO of the agency that runs the men’s group home, says that if he withdraws $125,000 worth of residential staff hours for these men, “someone will get hurt.” 

“It’s not a position these four men should be in, nor should the agency be in this position,” Kane told state officials at a meeting of the Employment First Task Force July 12. 

Professionals acknowledge that, barring a traumatic event, the needs of a person with intellectual or developmental disabilities remain relatively stable over the course of a lifetime. 

Yet one chart prepared in 2015 by a healthcare consulting company under contract with the state shows the level of need changed for 47 percent of clients who had been re-assessed since the Supports Intensity Scale was introduced in 2011. 

For AccessPoint RI, a private service provider, those changes have resulted in a cumulative loss of $970.000 in developmental disability funding, roughly 12 percent of the budget, Kane said. 

If the tool is reliable, the score shouldn’t change dramatically,” Kane said. “Either the tool is not reliable, or you know it was all manipulated” to reduce pressure on state spending, he said.

Jane Gallivan, the interim Director of Developmental Disabilities in the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, said, “We definitely will take a hard look.”

Claire Rosenbaum, Adult Services Coordinator for the Sherlock Center on Disabilities at Rhode Island College, said she has received numerous reports that social workers conducting the SIS interviews challenge the accuracy of answers family members give to specific questions. 

Or, said Mary Beth Cournoyer, a parent member of the Employment First Task Force, the interviewer does not argue with family members’ answers but merely substitutes other ones.  This becomes apparent, she said, when parents review the completed assessment and see that the ratings on needs differ from the ones they had given. 

Cournoyer said parents need training on what to expect from a SIS questionnaire because the answers they give could have unexpected ramifications.  

For example, parents may say that their sons or daughters can dress themselves, when the reality is much more nuanced. Without someone to put away the out-of-season clothes so they are out of reach, individuals with disabilities may dress inappropriately for the weather, she said. They may be capable of dressing themselves, but may sometimes refuse to do so.

Cournoyer indicated that parents don’t realize they need to completely remove from the picture the supports they and other family members provide naturally before they say whether their sons or daughters can perform a particular task. 

Jennifer Wood, the Deputy Secretary of Health and Human Services, said “no topic has come up with more regularity than the SIS. We should have some focus groups.”  

Under order of the U.S. District Court, and to avoid a possible contempt hearing, BHDDH changed its SIS policy July1 –nearly two years after it first agreed to do so -to divorce the assessment of need from funding considerations. 

That new language is intended to resolve a conflict of interest noted by the U.S. Department of Justice in its 2014 findings that the state’s sheltered workshops and segregated day programs violatedthe integration mandate of the Americans With Disabilities Act, The 1999 as spelled out by the  1999 Olmstead decision of the U.S. Supreme Court.  

In a subsequent consent decree designed to remedy the ADA violations, the state agreed to change its SIS policy by Sept. 1, 2014. 

The policy then in place said, in part: “Starting January 1, 2013 BHDDH will assign service tiers (funding allocations) based on the results of an individual SIS assessment. 

A year later, the DOJ said in its findings: 

“Our investigation revealed that BHDDH staff maintains primary responsibility for administering the Supports Intensity Scale, and they are also part of the agency that administers the statewide budget for developmental disability services.This is a seeming conflict of interest because the need to keep consumers’ resource allocations within budget may influence staff to administer the SIS in a way that reaches the pre-determined budgetary result.” 

The DOJ  referred to similar warnings from the American Association on Intellectual and Developmental Disabilities, which created the SIS.   

The consent decree prohibits the SIS from being used as a funding mechanism.  

The new state policy, adopted July 1, reads, in part: “All decisions involving SIS tier assignments (levels of need) and any changes to SIS tier assignments are made solely on the basis of individual support needs as indicated by the SIS assessment in a manner that is consistent with individual’s support needs, separate and apart from resource allocation considerations.” 

How the change in policy will play out in practice is not yet clear.

According to a monitor’s report to the court in August, 2015, the state reported making the necessary changes in the administration of the questionnaire, including the re-training of interviewers, but complaints from parents have persisted. 

The disagreements over the SIS have resulted in families filing appeals. Most appeals are granted, according to Charles Williams, who retires as Director of Developmental Disabilities July 22. Data on the number of appeals, successful or otherwise, is not readily available. 

Wood and Gallivan promised members of the Employment First Task Force they would get to the bottom of the issue.                               

The Employment First Task Force, created by the consent decree, consists of members representing community organizations, adults who themselves have disabilities, and parents.   The task force, which holds public meetings, is intended to serve as a bridge between state government and consumers and families. 

The next meeting is August 12 at 2 p.m. at the Community Provider Network of Rhode Island, 110 Jefferson Blvd., Warwick.

 

General Assembly Approves $15.4 Million Increase For DD; Worker Raises Are Assured

By Gina Macris 

Rhode Island’s developmental disability budget for the next fiscal year includes assurances that aa total of $9.1 million in Medicaid money will be spent to raise pay for direct support workers and to begin transforming the state’s system of services for those with intellectual challenges.

Shortly after 1:30 am on Saturday, June 18, The Senate approved total developmental disability funding of $246.2 million beginning July 1 in concurrence with the House vote taken Wednesday. That total, almost all of it state and federal Medicaid funds, is nearly $15.4 million more than the General Assembly approved last year at this time for the current budget, which closes on June 30.

New budget language ensures that $4.5 million in state revenue earmarked for worker raises and performance-based contracts can’t be used for anything else in the overall appropriation of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) in the fiscal year that begins July 1.

The language is significant. In the recent past, as much $9 million has been budgeted in a single year to raise the wages of some 4,000 workers who provide direct support services, but the money has gone instead to help close deficits in the BHDDH budget.

The workers make an average of about $11.50 an hour, often less than the clients they support in jobs in fast food restaurants. Many of the direct support staff receive public assistance,  according to testimony presented to the House and Senate finance committees during the current legislative session.

The big difference between this year and past legislative sessions has been a federal court case aimed at enforcing a 2014 consent decree in which Rhode Island agreed to transform sheltered workshops and segregated day programs into a community-based system of services over a 10-year period. The decree settled a U.S. Department of Justice investigation that found the sheltered workshops violated the integration mandate of the Americans with Disabilities Act and the 1999 so-called Olmstead decision of the U.S. Supreme Court which clarified that requirement.

In late January of this year, Judge John J. McConnell, Jr. of U.S. District Court became actively involved in monitoring the state’s compliance with the consent decree. In May, he issued an order putting the state at risk for contempt if it does not meet any one of nearly two dozen specific goals.

One of the requirements in the order is that the state adopt increased funding sought by Governor Gina Raimondo for developmental disabilities in the next fiscal year “in order to fund compliance with the Consent Decree.” The order does not mention a specific dollar amount.

Several other requirements in the order collectively set an August 1 deadline for implementing appropriate raises for direct support staff, regular supervision of workers, and a pilot group of performance-based contracts for supported employment services.

It’s not yet clear how much money the raises will add to the workers’ pay, or what the incentives will be in the performance-based contracts.

Initially, Raimondo’s budget proposal included a little more than $5 million for raises of 45 cents an hour, but that sum was not considered enough to provide performance initiatives to the private agencies that provide most of the developmental disability services in Rhode Island. .

After improved state revenue projections in May, Raimondo added another $4 million to wages and other increases to providers. .  

Raimondo sought protective language to segregate state revenue budgeted for pay increases for developmental disability workers, but that wording was eliminated in the budget passed by the House Finance Committee.

Sometime before the June 15 vote on the House floor, however, new and more detailed language was inserted, a House spokesman confirmed Friday night. 

The new language says that $4.5 million of general revenue “shall be expended on private provider direct support staff raises and associated payroll costs to include targeted increases associated with performance-based contracting and system transformation incentives” authorized by BHDDH.

Because funding for developmental disability services is part of the state’s Medicaid program, the $4.5 million in state revenue set aside for raises would be matched by federal funds, for a total of slightly more than $9 million..

Raises also must be approved by the Office of Management and Budget and the Executive Office of Human Services, according to the budget language. Changes in reimbursement methods must be approved by the Governor’s office and OMB.

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.  

 

 

 

Consent Decree Task Force Session Separates "Employment First" Fact From Myth

Photo by Anne Peters

Photo by Anne Peters

Mary M. Madden, Rhode Island Consent Decree Coordinator, left; and Ray Bandusky, Executive Director of the Rhode Island Disability Law Centerm right. Madden spoke about exceptions to the consent decree "employment first" policy at a recent meeting of the Employment First Task Force.  

By Gina Macris

The 2014 consent decree designed to broaden employment opportunities for persons with developmental disabilities in Rhode Island doesn’t mean that everyone who receives adult services must work.

Yet the idea that there are no exceptions to the consent decree’s “employment first” philosophy has grown into a myth, resulting in considerable confusion and anxiety about the impact of the agreement on those who might not be suited for supported employment in the community.

The issue surfaced in several public forums in the past few months.

For example, in early April, state lawmakers heard from one of their colleagues about a man whose medical records listed 17 surgeries, and yet his family was told his support services for daytime activities would be cut off unless he looked for work.

A few weeks later, at a different forum, state officials were told about a 56-year old man who, according to his sister, doesn’t understand the concept of work. His family also was told he needed to look for work, or face loss of daytime support services.

In fact, the consent decree makes allowances for these kinds of cases. But it appears that its provisions are not well understood by the public, and in at least in some cases, by state employees assigned to help individuals with developmental disabilities and their families.

At a statewide meeting in late March, the organization Advocates in Action poked holes in several misconceptions about the consent decree with a series of wacky skits wrapped around the title “Mythbusters,” a take-off on the movie “Ghostbusters.” Advocates in Action, whose members are consumers of developmental disability services advocating for themselves, produced the show, with support from their peers and staff. The first myth they debunked was the “no-work/ no-funding” notion.

The topic of exceptions to the employment policy in consent decree came up most recently at the May 10 meeting of the Employment First Task Force at the offices of the Community Provider Network of Rhode Island (CPNRI) in Warwick.

The Task Force is a creature of the consent decree, which specifies that its membership must include representatives of consumers, families, and a variety of community organizations focused on developmental disabilities, like the Rhode Island Disability Law Center, the Sherlock Center on Disabilities at Rhode Island College, the Rhode Island Parent Information Network (RIPIN), and others..

The Task Force, whose membership does not include any representative of the state disability agency, is intended to serve as a resource for both government and the community.

At the May 10 meeting, the federal consent decree monitor, Charles Moseley, pointed out in a telephone conference call that the agreement does contain an “employment first” policy. The policy serves as the foundation for remedying Rhode Island’s violations of Title II of the Americans with Disabilities Act, (ADA), which says that disability services and supports should be applied in the least restrictive setting that is appropriate for an individual.

The policy makes “work in integrated employment settings the first and priority service option” for adults with disabilities, according to the consent decree.

That said, both Moseley and the state’s consent decree coordinator, Mary M. Madden, agreed on the exceptions to the policy.

Madden, who attended the meeting in person, elaborated. She said individuals who say they don’t want to work will be asked to first participate in trial vocational and work experiences so they can later make an “informed choice” about employment.

If they ultimately choose not to work, they must apply for a variance to the “employment first” policy, she said, but if they are of retirement age, or have health and safety issues that prevent them from looking for a job, no variance is necessary.

Claire Rosenbaum, Adult Supports Coordinator for the Sherlock Center on Disabilities, said “nobody in the community” knows what the variance process is. The notion that certain individuals would be exempt from seeking a variance “is not being communicated at all,” she said.

Madden said “lots of people have significant health concerns. They may say, ‘my goal is to maintain my health’ and consider employment in the future.”

“If you’re in crisis, you’re not thinking about a job. Without the context of that information,” she said, “just talking about the variances” isn’t useful.

Madden was asked about the criteria for determining that someone has a medical or behavioral issue exempting the individual from pursuing employment. She said she didn’t know. “That work needs to be done very soon,” she said.

It’s complicated, she said. Some people have very complex disabilities who are nevertheless working, she said, “and you don’t want to take that off the table for someone.”  

The consent decree required the court monitor and the parties to the agreement - the state and the U.S. Department of Justice - to “create a process that governs the variance process within 30 days” of the date the agreement was signed.

That signing date was April 8, 2014.  The variance process still hasn’t been hammered out completely, although Madden indicated it would be finished over the summer.

One big unanswered question is the cost of providing services that are required as part of the variance process.

The consent decree says that to be in a position to make an “informed” choice about job-hunting, someone must first participate in a vocational assessment and a sample work experience, as well as receive education and information about employment and counseling about the effect of employment on disability benefits. 

Madden, in a follow-up email, referred a reporter to Andrew McQuaide, Chief Transformation Officer at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. Efforts to reach McQuaide Thursday and Friday May 12 and 13 were unsuccessful.

The dissemination of information about the “employment first” policy, as well as exceptions to it, was to have been part of a communications plan the consent decree required to be in place by Sept. 1, 2014, but like the variance process, the communications plan has not been finalized.

The plan, still in the works, is intended to provide public education and information about the decree and connect various segments of the developmental disability community with each other.

Moseley, the monitor, must approve it, and he has been asking for progress reports, most recently in a filing with the U.S. District Court.

At the task force meeting, Madden said “there is agreement in very general terms” on the plan.

Questions of cost and sources of funding have not been resolved for the communications plan, according Sue Donovan of RIPIN, who is familiar with it.

For readers wishing additional information:

Mary M. Madden, the state’s consent decree coordinator, has offered to answer questions about the consent decree via email, at mary.madden@ohhs.ri.gov or by phone at 527-2295.

·        Here is variance language from the consent decree:

L. Any individual eligible for a Supported Employment Placement, but who makes an informed choice for placement in a facility-based work setting, group enclave, mobile work crew, time-limited work experience (internship), or facility-based day program, or other segregated setting may seek a variance allowing such placement. Variances may only be granted after an individual has:

1. Participated in at least one vocational or situational assessment, as defined in Sections II(11) and (16);

2. Completed one trial work experience, as defined in Section II(15);

3. Received the outreach, education, and support services described in Section X; and

4. Received a benefits counseling consultation, as described in Section IV(6).

M. If a variance is granted, the individual must be reassessed by a qualified professional, and the revised employment goal reevaluated, within 180 days, and annually thereafter, for the individual to have the meaningful opportunity to choose to receive Supported Employment Services in an integrated work setting. The Parties and the Monitor shall create a process that governs the variance process within 30 days of entering this Consent Decree.

N. Individuals who seek a variance from this Consent Decree, but who are unable to participate in a trial work experience, pursuant to Section V(L), due to a documented medical condition that poses an immediate and serious threat to their health or safety, or the health or safety of others, should they participate in a trial work experience, may submit documentation of such a condition to the Monitor to seek exemption from Section V(L)(2). Exemptions from trial work experiences will be subject to the Monitor’s approval.

O. The State will ensure that individuals currently in sheltered workshops who receive a variance pursuant to Section V(M) will continue to receive employment services.

The entire consent decree can be found at this link.

 

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.