Olmstead Monitor: RI Needs Overhaul Of DD System To Comply With 2014 Agreement

By Gina Macris

During the next three years, Rhode Island must completely restructure its services for adults with intellectual and developmental disabilities and increase financial support accordingly to fully comply with a federal civil rights consent decree by the 2024 deadline.

A. Anthony Antosh

That is the conclusion of an independent federal court monitor, A. Anthony Antosh, in an Oct. 7 report to Chief Judge John J. McConnell, Jr. of the U.S. District Court.

At McConnell’s direction, Antosh says he’s also working on a dollar figure for the cost of compliance, using an outside $1.1 million analysis of existing services commissioned by the state itself.

The state agreed, under the consent decree in 2014, to end its reliance on sheltered workshops and group day care centers and instead put adults with developmental disabilities in the driver’s seat when choosing a path in life, with an emphasis on regular employment and participation in community activities.

The last sheltered workshop closed in 2018, but many of the other goals of the consent decree have remained elusive, and Judge McConnell has grown impatient with a lack of funding he says is necessary to lay the foundation for compliance by the time federal oversight is scheduled to expire in 2024.

John J. McConnell, Jr.

“If anybody couldn’t tell, I am obsessed with the issue of funding as essential for us to get there,” McConnell said during a virtual hearing in July.

“If we don’t come up with a way to systemically support the (service) providers, then the whole thing will be meaningless,” McConnell said.

He has said he is prepared to tell the state to “find the money” to comply with the consent decree. State officials who control the purse strings must participate in the redesign of services, the judge has said.

In the most recent monitor’s report, Antosh set the tone for his recommendations by saying that compliance is “not found in a narrow analysis of the benchmarks of the Consent Decree, but is rooted in defining the structural changes that need to occur in order that the goals of the Consent Decree can be achieved.”

In bold print, he highlighted the fact that the outside analysis of the existing system found that most of the private service providers are “fragile and profoundly undercapitalized.”

In a separate report, the state responded to a court order that it address 16 fiscal and administrative barriers to the integration of people with developmental disabilities into their communities as mandated by the consent decree. The summary is the first of six progress reports the state must make to Judge McConnell by next June on its planning effort for long-range reform.

In its report, the state set a deadline of March, 2022 to overhaul its fiscal system. The changes include the elimination of three practices that for years have been identified as problematic by families and providers:

• staffing ratios that discourage community integration, so that in some cases, one worker must supervise up to five people on an outing, whether or not those people want to be there.

• documentation of staff time in 15-minute increments, which providers say diverts significant resources that otherwise could be used for direct services.

• Allocation of a certain percentage of services for segregated facility-based activities.

Alluding to the budget uncertainties caused by the ongoing Covid-19 pandemic, the state’s seven-page summary cautions that the planning efforts are “dependent upon the continuation of current state staffing and budgetary levels.”

Monitor’s Budget For Reform Coming “Soon”

McConnell has asked Antosh to analyze current funding and make a dollars-and-cents recommendation for the cost of implementing the needed comprehensive changes.

Antosh said that report will be completed “soon.” He said he has begun that work, relying primarily on data drawn from an 18-month study done by the New England States Consortium Systems Organization (NESCSO) for the state’s disability agency.

The 143-page NESCSO study presented a number of findings and options for change but made no recommendations, at the behest of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Antosh said there is a need for systemic restructuring of existing services and supports, which are now “essentially based on group activities that occur in a blend of facility and community settings.”

The situation is exacerbated by a difficulty in recruiting and retaining high quality staff and by the COVID-19 pandemic, which in emphasizing the health risks of large gatherings has “reinforced the diminishing value of facility-based group services,” Antosh said.

The pandemic also has led to a setback in the progress made in the area of employment for adults with developmental disabilities. In June, as the state was beginning to reopen, only 31 percent of those who previously held jobs were still actively employed, Antosh said. (Some on furlough have since returned to work.)

Among work crews hired for large scale commercial cleaning or laundry operations and the like, only about half were working, he said.

The statistics underline a need for “new and intensified approaches to job development,” he said. “What is needed is a new model for providing supports that is more individualized, community based, and uses funds and supports from an increased variety of sources,” including the state’s Department of Labor and Training, Antosh said.

Family Hesitation About Integration

While the gears of state government are focused on moving Rhode Island into compliance with the federal government’s mandate of integrating individuals with developmental disabilities into the larger community, more than a third of the families with an adult son or daughter who would benefit say they oppose or are not yet convinced that the push toward employment is worthwhile.

The pandemic aside, significant numbers of families also express opposition or hesitation about their loved ones’ increased participation in community activities.

For Antosh, who included survey results of families as part of his report, the statistics underscore the need for adolescents to experience work-related and social activities in their communities as part of their education and for families to receive more information about the breadth of available opportunities.

It is perhaps most telling that among families of high school students, who are more likely than their older peers to have had internships and community experiences as part of their education, only 3 percent were opposed to jobs for their sons and daughters and 10 percent said they weren’t sure. Two thirds of families of adolescents said they believed the young people should have jobs as adults. Other parents of high school students – about one in five- said their son or daughter had to deal with other challenges before turning to employment. This is typically the case for those with chronic health problems.

Source: Monitor’s Report To U.S. District Court 10-7-20

The 2014 statewide consent decree draws its authority from the Integration Mandate of the Americans With Disabilities Act, which was reinforced by the Olmstead decision of the U.S. Supreme Court. The high court said that states must deliver services to all persons with disabilities in the most integrated setting that is therapeutically appropriate, and it presumed that setting to be the community.

In 2014, the U.S. Department of Justice found that the state violated the Integration Mandate by funneling high school students from segregated educational programs with low expectations to a lifetime of isolation in sheltered workshops and day care programs. In signing the consent decree, the state agreed to correct the violations by 2024. (A preliminary case against the state and the city of Providence in 2013 was merged into the statewide consent decree a year ago after Judge McConnell found the city and its school department had turned around a segregated high school program for students with developmental disabilities, leaving only the state as the defendant.

Antosh outlined several overarching features of successful implementation of the consent decree, including these:

• Each person will have the supports necessary to enjoy a self-determined, self-directed life based on work and non-work activities in the community.

• Private provider agencies will have the funding, staffing and other resources they need to meet the support needs of all persons receiving funding through the Division of Developmental Disabilities.

• Every adolescent and adult with intellectual or developmental disabilities will have the information and guidance they need to navigate a simpler and more efficient system of services.

• All adolescents and young adults leaving school will have had enough transitional work-related and non-work experiences in the community to make informed choices about jobs and careers, as well as a plan to direct their own programs or sign on with a provider organization.

Antosh recommended that the state develop a three-year budget strategy, beginning July 1, 2021, to “stabilize” developmental disability services and provide sufficient funding to implement the consent decree.

The monitor’s recommendations include a new, formal role for the Department of Labor and Training (DLT), which until now has not been a part of the multi-agency state team responsible for official responses to the court.

Antosh said DLT should immediately join BHDDH, the state Department of Education, the Department of Human Services, and the Executive Office of Health and Human Services in working on consent decree compliance.

DLT also should include all teenagers and adults with developmental disabilities in the workforce initiatives it administers, the monitor said.

By Jan. 1, 2021, the state should create an “Employer Task Force” to promote employment of those with developmental disabilities, Antosh said. The task force would identify relevant workforce trends and advise state officials and provider organizations about ways to reach out to prospective employers and offer employers incentives and support.

By April 1, 2021, the state must identify every possible source of funding that could support the consent decree and describe ways these sources can be “braided” to support the various requirements of the agreement.

As for private providers, the backbone of the service system, Antosh set a deadline of April 30, 2021 for them to develop action plans for the future. There are 36 provider agencies, most of them offering both day and residential services. In their plans, providers should redefine the support area that will be their focus, address consent decree issues, make budget projections and include internal quality improvement programs.

Just as the state has established five workgroups to address fiscal and administrative problems, Antosh recommended the state create additional issue-oriented work groups whose members are drawn from the ranks of state officials and community organizations, like the Employment Force Task Force.

One group would develop strategies to stabilize the workforce by increasing salaries, elevating professionalism through training, and creating a career ladder.

Other groups would address specific plans for:

• putting individuals at the center of mapping out long range and short-term goals for their future and strategies for achieving them

• ensuring young people have a smooth transition from high school to adult services,

• creating new models for providing services and supports for employment and community-based activities.

• enhancing the use of technology as a support strategy

• Developing alternative transportation options, including stipends that allow individuals to arrange their own rides

• Improving outreach to families, including those speak languages other than English and come from diverse cultures.

To read the full monitor’s report, click here. To read the state’s report, click here.

Photos by Anne Peters

Healthcare Consultant Says "It's Past Time" For RI To Revisit Rates It Pays For Private DD Services

From foreground, on the right, Rebecca Boss, Louis DiPalma, Peter Quattromani, Kelly Donovan, Deb Kney, and Kevin McHale, all members of the Project Sustainability Commission. DiPalma is chairman. All photos by Anne Peters

By Gina Macris

Rhode Island is overdue in undertaking a comprehensive review of rates it pays private providers of services for adults with developmental disabilities, according to a top official of a healthcare consulting firm who helped develop the existing payment structure seven years ago.

Mark Podrazik

“It’s past time,” said Mark Podrazik, president and co-founder of Burns & Associates. He said the firm recommends an overhaul of rates once every five years. Podrazik appeared Nov. 13 before a Senate-sponsored commission which is evaluating the way the state organizes and funds its services for those facing intellectual and developmental challenges.

The commission chairman, Sen. Louis DiPalma, D-Middletown, had invited Podrazik to help the 19-member panel gain a deeper understanding of the controversial billing and payment system now in place before it recommends changes intended to ultimately improve the quality of life of some 4,000 adults with developmental disabilities.

Burns & Associates was hired by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) in 2010 to develop and implement Project Sustainability, a fee-for-service system of payments to hold private providers accountable for the services they deliver and give consumers more flexibility in choosing what they wanted, Podrazik said.

In answering questions posed by commission members, Podrazik made it clear that the final version of Project Sustainability was shaped by a frenzy to control costs. The state ignored key recommendations of Burns & Associates intended to more equitably fund the private service providers and to protect the interests of those in the state’s care.

Podrazik said that overall, Burns & Associates believed the Division of Developmental Disabilities (DDD) had neither the capacity or the competence implement Project Sustainability at the outset or to carry out the mandates to companion civil rights agreements with the U.S. Department of Justice reached in 2013 and 2014.

“I think people were a little shocked” by the new federal requirements to integrate day services in the community and by the question of “who was going to do it,” Podrazik said of the DDD staff at the time.

DDD also had an antiquated data system that ill served Project Sustainability and the separate demands for statistics imposed by a federal court monitor overseeing the consent decrees.

Podrazik said the aged IT system was the biggest problem faced by Burns & Associates.

Asked whether funding changed to implement the civil rights agreements, Podrazik said he didn’t recall that there were any significant changes, if any at all. Burns & Associates ended its day-to-day involvement with BHDDH in Feb. 2015, when Maria Montanaro became the department director. (She has since been succeeded by Rebecca Boss, and there has been a complete reorganization and expansion of management in DDD. A modern IT system recently went online.)

Between the fall of 2015 and early 2016, Burns & Associates had a separate contract with the Executive Office of Human Services, which asked for advice on cutting supplemental payments to adults with developmental disabilities.

While Project Sustainability was supposed to give consumers more choice, the U.S. Department of Justice found just the opposite in a 2013 investigation.

DOJ lawyers wrote in their findings that “systemic State actions and policies” directed resources for employment and non-work activities to sheltered workshops and facility-based day programs, making it difficult for individuals to get services outside those settings.

“Flexibility” Functioned As Tool For Controlling Costs

At the meeting Nov. 13, Andrew McQuaide, a commission member and senior director at Perspectives Corporation, a service provider, suggested that features of Project Sustainability ostensibly designed to encourage flexibility and autonomy for those using the services functioned in reality as mechanisms to control costs.

Podrazik said, “In my heart of hearts, I think everybody wanted more flexibility,” but “then the financial constraints were imposed in such a way that the objectives could not necessarily be met.”

“We were not hired to cut budgets,” Podrazik said. Going into the project, “we did not know what the budget was” for Project Sustainability.

He said Burns & Associates recommended fair market rates for a menu of services under the new plan. For example, it proposed an hourly rate for direct care workers was $13.97. But BHDD refused the consultants’ advice to fight “aggressively” for this level of funding, Podrazik said. With the budget year that began July 1, 2011, BHDDH recommended, and the General Assembly adopted, a rate of $12.03 an hour, nearly two dollars less.

The state had the option to change the rate effective Oct. 1, 2011, and it did, dropping the hourly reimbursement for direct care workers to $10.66 to absorb last-minute cuts made by the General Assembly in the developmental disabilities budget for the fiscal year that had begun July 1. (Rates have increased slightly since then. The average direct care worker made about $11.36 an hour in early 2018.)

“I understood why the department (BHDDH) was doing what they were doing, because they were getting an incredible amount of pressure on the budget – so much so that they were getting their hand slapped when they were over,” Podrazik said.

“From the outside coming in, there was a lack of confidence that BHDDH could actually administer a budget that came in on target, so that there was an intense scrutiny to keep the budget intact. It did not help that that they were cut and that there were no caseload increases (in the budget) for multiple years,” Podrazik said.

“They were behind the eight-ball before anything was contemplated,” he said.

Louis DiPalma, Rebecca Boss

DiPalma, the commission chairman, saw the situation from a different perspective: “Someone will say the agency exceeded the budget, but if it was unrealistic from the get-go, you’re going to exceed that budget.”

As a legislator, DiPalma said, he has looked at developmental disability service budgets for ten years, and there hasn’t been one that was realistic.

“Right,” Podrazik replied, adding that funding for developmental disabilities had been declining from year to year in Rhode Island, even before Burns & Associates was hired for Project Sustainability.

Podrazik said he hasn’t been following developmental disabilities in Rhode Island during the last few years, but “somebody should look at the rates, if for no other reason” than “we’re in an economy that’s very different than it was in 2010.” He cited health care costs and a move toward “$15 an hour wages.”

“It’s a whole different landscape,” he said.

Consultants Recommended Eliminating Separate State-Run DD System

In 2011, with Project Sustainability facing a funding shortage even before it got off the ground, Burns & Associates recommended that BHDDH get more money to support the services of private agencies by eliminating – gradually – the state-run developmental disabilities system, called Rhode Island Community Living and Supports (RICLAS.)

At the time, average per-person cost for a RICLAS client ran about three times more than the average in the privately-run system. All the RICLAS clients could eventually be transferred to private providers, Burns & Associates advised the state.

“This recommendation was shut down immediately, with the reason being a protracted fight with the unions,” Podrazik said in prepared remarks.

Burns & Associates then recommended lowering the reimbursements to RICLAS. “This was also shut down,” Podrazik wrote.

“It was apparent early on that there were funds to be redistributed between RICLAS and the Private DD system, but there was no appetite to do so. It is unclear exactly where this directive was coming from within state government, but that was the directive given” to Burns & Associates, Podrazik wrote.

Providers Expected To Maintain Same Service For Reduced Pay

Commission members asked Podrazik whether anyone at Burns & Associates or state government believed that it was possible for private service providers to absorb the rate reductions written into Project Sustainability, given the fact that about half the agencies were already running deficits before the program was enacted.

McQuaide quoted from the memo that BHDDH sent the General Assembly in May, 2011, explaining its approach to implementing Project Sustainability.

“We did not reduce our assumptions for the level of staffing hours required to serve individuals,” the memo said. “In other words, we are forcing the providers to stretch their dollars without compromising the level of services to individuals,” the memo said.

McQuaide asked, "Did anyone actually think that was possible?”

“I don’t know,” Podrazik replied, but he remembered meetings in which participants expressed sentiments similar to the quotation highlighted by McQuaide.

Given the budgetary restrictions, Podrazik said, he favored reducing rates rather than cutting back on services or creating a waiting list for services.

Podrazik said Burns & Associates was hired to deal with certain problems; not to review services for adults with developmental disabilities top to bottom.

Assessment Used For Funding Became Controversial

Asked to change the assessment used to determine each person’s need for support, Burns and Associates recommended the Supports Intensity Scale, or SIS, and advised it should be administered by an entity “other than the provider or the state to avoid the perception of gaming the system,” he said.

The state went forward with the SIS, linked it to funding individual authorizations, or personal budgets for clients, and assigned the administration of the assessment to the state’s own social caseworkers.

The fact that the SIS is administered within BHDDH has been criticized by the DOJ and an independent federal court monitor. With federal scrutiny on BHDDH, and numerous complaints from families and providers that the SIS scores were manipulated to cut costs, the department switched to a revised SIS assessment and retrained all its assessors in November, 2016.

Funding Authorized Three Months At A Time To Control Costs

According to Podrazik, Burns & Associates recommended each client’s funding authorization – or personal budget – be awarded on an annual basis, to allow individuals to plan their lives and providers to look ahead in figuring out expenses.

But the state insisted on the option to change reimbursement rates on a quarterly basis as a means of managing costs more closely within a fiscal year. That was the feature of Project Sustainability which enabled BHDDH to impose two consecutive cuts on providers, once on July 1, 2011, and a second time on Oct. 1, 2011. Since then, rates have increased incrementally.

At the hearing, Podrazik illustrated the difference between a yearly authorization and a quarterly one in the life of a consumer.

“Maybe someone goes away for the month of August,” he said. If that person has a quarterly authorization, the money for services in August reverts to the state. But with an annual authorization, the funding can be used for the person’s benefit during another month of the year.

Podrazik agreed with a commission member, Peter Quattromani, CEO of United Cerebral Palsy, that quarterly authorizations compromise the flexibility intended to be part of the design of Project Sustainability.

Podrazik said he knows of no other state that makes quarterly authorizations for developmental disability services.

DiPalma, the commission chairman, asked if there was any thought given to the impact of a requirement that providers document how each staff person working during the day spends his or her time with clients, in 15-minute blocks.

Podrazik said, “I don’t think people thought the impact would be negligible, but the desire for accountability outweighed that, and I fully endorsed them.”

Project Sustainability decreased overhead costs to private providers but did not offset those cuts with allowances for hiring the personnel necessary to process the documentation.

When DiPalma thanked Podrazik for his time, Podrazik quipped that Rhode Island was “the last place I thought I’d ever be.”

“The Rhode Island project wore me down, so I’m working with hospitals these days,” Podrazik said.

He said he came back to Rhode Island because DiPalma was very persuasive and because he wanted to “set the record straight” on the involvement of Burns & Associates with Project Sustainability.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Future of RI Fedcap Agency Still Unclear; State Continues To Collect Evidence For Final Decision

By Gina Macris

With less than two months remaining before the state of Rhode Island decides whether to shut down a subsidiary of the New York-based Fedcap Rehabilitation Services, licensing officials at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) are still collecting evidence that will have a bearing on the state’s decision.

The performance of Community Work Services (CWS), which also has come under criticism by federal officials, is expected to figure in a U.S. District Court hearing Nov. 30 about a 2013 settlement of disability rights violations involving CWS and its predecessor, the now-defunct sheltered workshop Training Through Placement (TTP.)

In an interview Nov. 3, the director of licensing for BHDDH, Kevin Savage, said that the probationary status of CWS, in effect for nearly a year, “has not been resolved.”  Licensing regulations place a 12-month limit on probation.

 A federal court monitor said during a court hearing in May that the number of former TTP clients who had found jobs had been “essentially flat” for the previous four years. A lawyer for the U.S. Department of Justice also cited a lack of progress that was evident during a site visit earlier in the spring.  About half of individuals protected by the 2013 agreement – 62 individuals at last count – are currently served by CWS.

In an interview Nov. 3, Savage, the BHDDH licensing administrator, said that the most recent "monitor’s report is primarily about the programming, and the programming issue is not resolved.

“We’re reading the monitor’s reports and our own reports,” Savage said, and “we are not satisfied with the program resolution.”

Savage said that BHDDH will continue – “and I want the word 'continue' to be clear” – to look at “every aspect of what CWS does, including payment structures, including respite (care), and including how they work with families and participants – everything.”

Savage also said, “I think it’s okay to say we are accumulating evidence. They (CWS) know that, and I think it’s okay for the public to know that. The evidence speaks to whether they should be shut down, or whether they should not be shut down. Evidence does that.”

“Our goal, and our only goal, is to ensure that participants have the best service available that is possible,”  he said. “We’ve communicated that clearly to the providers we work with and the families we work with. Our job is not to protect businesses. Our job is to protect participants.”

CWS has been on probation since the beginning of 2017. BHDDH licensing officials shut down its operation at the former TTP building at 20 Marblehead Ave., North Providence, in March because of unsafe conditions - a problem separate from programmatic concerns - but the agency re-opened with state permission in different quarters a few days later.

In this and any other probationary case, Savage said, the public has the right to know the “final agency action.”  Adverse decisions may be appealed by the agencies in question, he said.

The performance of CWS is entwined in the state’s accountability to the federal court for satisfying the demands of the 2013 settlement agreement that protect special education students at Mount Pleasant High School, including the former Birth Academy, and former clients of TTP - a total of 126 individuals.

A broader agreement between the state and the DOJ signed in 2014 covers all adults with developmental disabilities who have at one time been segregated in either sheltered workshops or day centers - more than 3,000 people. .

In connection with the so-called  "Interim Settlement Agreement" of 2013, the federal court monitor, Charles Moseley, said in a report to the court in September that the state has missed two deadlines in an order issued by Judge John J. McConnell, Jr: They are

•  A July 30 deadline for improving the quality of individual career development plans among CWS clients.
• A June 30 deadline for verifying the accuracy of data reported by CWS on its clients’ progress.

So-called “career development plans” describe how current services and plans for the near future fold into blueprints for life-long work goals that are supposed to take into account both the needs and preferences of individuals with developmental disabilities.

The November 30 hearing is listed on the U.S. District  Court calendar in connection with the statewide 2014 consent decree, but the state's interim Consent Decree Coordinator, Brian Gosselin, said recently at a public forum on developmental disability issues that the session will deal instead with the more narrow Interim Settlement Agreement of 2013, which was last heard in late May. A separate hearing on the status of the statewide consent decree is expected to be scheduled for the end of January, six months after its most recent hearing in late July.

Therap Gets RI Contract For DD Electronic Records

By Gina Macris

Therap Services of Waterbury, CT., a specialized information technology company, has won a contract worth $1,320,000 over three years, or $440,000 a year, to create an electronic case management system for the Rhode Island Division of Developmental Disabilities (DDD).

The conversion to electronic records is expected to make record keeping much simpler for state social workers and private providers and to greatly improve data collection for the U.S. District Court. Through an independent monitor, the Court is tracking implementation of integrated, community-based services for adults with developmental disabilities under provisions of a 2014 consent decree enforcing the U.S. Supreme Court’s Olmstead decision, which reinforces the Americans With Disabilities Act.

Kerri Zanchi, Director of Developmental Disabilities, could not say exactly how long the new system will take to roll out but estimated it might be 18 months to two years before it is fully implemented. Some parts of the system might be operational earlier, she said.

The electronic case management system will give state social workers and private service providers shared online access to the records of each client receiving federal and state-funded Medicaid services through the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Zanchi said Therap also offers a module to give families access to records, “but what it does and how we’ll use it, we’re not there yet. I couldn’t speak to that today,” she said in an interview in mid-September. A family module would not cost the state additional money, according to a spokeswoman for Zanchi.

Zanchi said DDD wants to build an electronic record system that responds to current operations and consent decree requirements.

“Our (DDD) system is changing and as it is changing we need to be evaluating the outcomes,” she said.

There is a work group which includes both state social workers and private service providers to help identify “the specific data needs” that must be built into the electronic records system, she said.

Rebecca Boss, the BHDDH director, said that “as much as we can do to expedite this, we will. We want to have this up and running as soon as possible.”

The lack of adequate data has made it difficult for the U.S. Department of Justice and the consent decree monitor to evaluate the state’s implementation efforts. About a year ago, the state devised an method of working around the limitations of the existing 30-year-old data system that can respond to specific questions from the monitor or the DOJ, but not on a real-time basis.

This patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College.

Therap and seven other vendors submitted applications for the electronic records contract in the fall of 2016. Zanchi and Boss said the contract was awarded at the end of the summer.

Therap also holds an electronic records contract for the investigatory unit of BHDDH, which deals with complaints of neglect and abuse. That contract was awarded in 2016, but no other details were immediately available.

Therap’s website describes the company as the leading provider of electronic health records for people with intellectual disabilities, with customers in 50 states and foreign countries.

This article has been updated with additional details on the Therap contract and those working with Therap to roll out the system. 

RI DD Public Forum Highlights Personal Choice, Inclusive Initiatives For Redesigning Services

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

By Gina Macris

During a public forum on Rhode Island’s developmental disability services Aug. 8, Deanne Gagne talked about the importance of personal choice in improving quality of life, for herself and others. 

“It’s really about the person in the center who’s driving the vehicle,” not the service system defining the options, said Gagne, a spokeswoman for Advocates in Action, a non-profit educational organization which encourages adults with developmental disabilities to speak up for themselves.

For Gagne on that day, personal choice turned out to be about the spontaneity of doing somethingmost adults take for granted: making a lunch date.

After the meeting, Gagne connected with an old friend who also attended the forum at the Coventry Community Center.

Because Gagne controls the way she uses her service dollars, she did not need to discuss with anyone how she and her wheelchair would get to and from the chosen restaurant.  Gagne’s assistant simply pulled Gagne’s cell phone out of the bag that hangs across the back of her chair and handed it to Gagne, who marked the date, time and place in her calendar and handed back the phone. That was that.

As a speaker during the forum, Gagne summarized the message of recent public sessions hosted by  Advocates in Action, in collaboration with the state and the Sherlock Center on Disabilities at Rhode Island College, on thinking “outside the system” or “outside the box” in planning for the future.

“It’s back to basics,” she said. “What do you want to do with your life, and what do you need to make that happen?”

Both a 2014 consent decree and a new Medicaid rule on Home and Community Based Services (HCBS) put personal choice at the heart of mandated changes in the approach to services. All developmental disability services in Rhode Island are funded by the federal-state Medicaid program.

One parent who has attended a recent Advocates In Action session on personal choice, or “person-centered thinking”, said there’s a long way to go before such a change becomes everyday reality.

“It seems like a giant step to get from where we are now to where we’re going,” said Greg Mroczek, who has two adult children with developmental disabilities.

None of the developmental disability officials who hosted the forum disagreed with him.

Zanchi           

But Kerri Zanchi, the director of the Division of Developmental Disabilities, and her administrative team made it clear that they want the public to participate in creating a new system of services in a much more active way than is the norm when bureaucracies adopt change.

Kevin Savage, director of licensing, who leads a continuing effort to rewrite developmental disability regulations, said, “We want to have regulations that are meaningful to participants and their families.” The committee rewriting the regulations, which began working in the spring, includes representation from consumers and family members. Savage said a draft of the proposed regulations should be completed in September and released for public comment later in the fall.

Also on Aug. 8, the Division put out a new call for individuals interested in serving on an external quality improvement advisory council.

The advisory council would complement an internal quality improvement committee as part of a broad effort intended to make sure services are faithful to the requirements of the consent decree and Medicaid’s Home and Community Based Rule. 

Anne LeClerc, Associate Director of Program Performance, said she would field inquiries about the quality improvement advisory council. She may be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Zanchi, meanwhile, yielded the floor to representatives of a fledgling effort to revitalize family advocacy called Rhode Island FORCE (Families Organized for Reform, Change and Empowerment), an initiative of the Rhode Island Developmental Disabilities Council.

Semonelli

Chris Semonelli of Middletown, a leader of the group, said it aims to become a springboard for legislative advocacy, starting with an exchange of ideas in the fall among those affected by the developmental disability service system. A date for the event, entitled “Coffee and Cafe Conversation,” has yet to be announced.

The Developmental Disabilities Council plans to support the family advocacy group for up to five years, until it can spin off on its own, according to Kevin Nerney, a council spokesman. Anyone seeking more information may contact him at kevinnerney@riddcouncil.org or 401-737-1238.

Francoise Porch, who has a daughter with developmental disabilities, touched on a long-standing problem affecting both the quality and quantity of available services: depressed wages.

“Direct care staff can’t make a living working with our children,” she said.

The General Assembly allocated $6.1 million for wage increases in the budget for the current fiscal year, which Governor Gina Raimondo signed into law Aug. 3 after the House and the Senate resolved an impasse over Speaker Nicholas Mattiello’s car tax relief plan, which emerged intact.

Although the language of the budget says the raises are effective July 1, the fiscal analyst for developmental disabilities, Adam Brusseau, could not say during the forum exactly when workers might see retroactive checks.

The extra funding is expected to add an average of about 56 cents an hour to paychecks – before taxes – but the precise amount will vary, depending on the employee benefits offered by private agencies under contract with the state to provide direct services.

The latest raise marks the second consecutive budget increase for direct care workers and the first in a five-year drive to hike salaries to $15 an hour.

For high school special education students anticipating a shift to adult services, “there seems to be a logjam” when it comes to families trying to figure out how many service dollars they will have and how far the money will go, according to Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College.

Rosenbaum

Zanchi said the Division of Developmental Disabilities aims to administer assessments that are used in determining individual budgets a year before an applicant leaves high school and needs adult services.  But Rosenbaum said that based on her contact with families of young adults, a year does not appear to be long enough. 

She elaborated: after the assessment, called the Supports Intensity Scale, families must wait a month or more for the results. Only then can parents explore the offerings of various agencies.  They may settle on one agency, only to be told that the agency is not accepting new clients with their son or daughter’s particular need. Then, when families decide to design an individualized program themselves, they must begin planning all over again.

“A year is not enough,” Rosenbaum said.

Zanchi said she will look into the problem.

Federal Judge Willing To Intervene In Rhode Island Budget Impasse To Protect Adults With DD

By Gina Macris 

A federal judge said today he is prepared to issue court orders to ensure that money keeps flowing in Rhode Island’s developmental disability system if the state budget impasse begins affecting services for adults with intellectual challenges.

Judge John J. McConnell, Jr., made that remark at today’s hearing (July 28) that reviewed the state’s progress in implementing a 2014 consent decree requiring an overhaul of daytime services to emphasize jobs paying at least minimum wage and integrated, community-based non-work activities for some 3600 individuals.

Rebecca Boss, the director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, told McConnell that she was “fairly confident” the budget dispute between the House and the Senate is having “no immediate impact” on the private agencies that count on state reimbursement to provide the day-to-day services.  However, she couldn’t say when things might change.

McConnell said he “would not be averse to entertaining court orders” so that the budget problem does not stand in the way of implementing the consent decree. “There are human beings involved,” he said.

He said it would fall to the U.S. Department of Justice to bring the issue before him, if and when it arises, because the state officials do not have the ability, or jurisdiction, to initiate any action.

Four Years After Settlement, Former Workshop Still Segregates Adults With DD - Monitor

photo by gina macris

Former Training Through Placement building at 20 Marblehead Ave., North Providence RI

By Gina Macris

A federal judge has taken the state of Rhode Island to task for failing to keep track of a former sheltered workshop that has continued to segregate adults with developmental disabilities, despite a landmark integration agreement four years ago that seeks to transform daytime services for those with intellectual challenges.

An order by Judge John J. McConnell, Jr. of U.S. District Court sets strict deadlines between the end of June and the end of July for specific steps the state must take to ensure that all clients of the former sheltered workshop lacking jobs or meaningful activities begin to realize the promise of the 2013 agreement.

The so-called Interim Settlement Agreement of 2013 focused primarily on special education students at the Birch Academy at Mount Pleasant High School and adult workers at Training Through Placement (TTP), which has become Community Work Services (CWS.)

The former sheltered workshop used Birch as a feeder program for employees, who often were stuck for decades performing repetitive tasks at sub-minimum wages – even when they asked for other kinds of jobs. Involved are a total of 126 individuals, according to McConnell’s count.

In 2014, after a broader investigation by the U.S. Department of Justice, the state signed a more extensive consent decree covering more than 3,000 adults and teenagers with developmental disabilities. The state promised to end an over-reliance on sheltered workshops throughout Rhode Island and instead agreed to transform its system over ten years to offer individualized supports intended to integrate adults facing intellectual challenges in their communities.

Together, the companion agreements made national headlines as the first in the nation that called for integration of daytime supports for individuals with disabilities, in accordance with the Olmstead decision of the U.S. Supreme Court. The Olmstead decision re-affirmed Title II of the Americans With Disabilities Act, which says services must be provided in the least restrictive setting which is therapeutically appropriate, and that setting is presumed to be the community.

McConnell’s order is the latest and most forceful development in a story that highlights not only the failings of the former sheltered workshop, Training Through Placement (TTP), but the state’s lack of a comprehensive quality assurance program for developmental disability services system-wide.

The former sheltered workshop run by CWS at 20 Marblehead Ave., North Providence, was closed by the state on March 16 on an emergency basis because of an inspection that showed deteriorating physical conditions. Individuals with developmental disabilities were “exposed to wires, walkways obstructed by buckets collecting leaking water, and lighting outages due to water damage,” according to a report to the judge. At that point, CWS had been working under state BHDDH oversight for about a year, because of programmatic deficiencies, according to documents filed with the federal court.

CWS is a program of Fedcap Rehabilitation Services of New York, which had been hired by then-BHDDH director Craig Stenning to lead the way on integrated services for adults with developmental disabilities at TTP in the wake of the 2013 Interim Settlement Agreement. Stenning now works for Fedcap.

With the CWS facility closed by the state, the program resumed operations on March 21 in space provided by the John E. Fogarty Center in North Providence under terms of a  probationary, or conditional, license with state oversight, according to a report of an independent federal court monitor overseeing implementation of  the 2013 and 2014 civil rights agreements in Rhode Island that affect adults with developmental disabilities.

The monitor said the state licensing administrator for private developmental disability agencies also notified the CWS Board of Directors and the Fedcap CEO of the situation, making these points:  

• the state was concerned about unhealthy conditions of the CWS facility
• ·the agency failed to notify the state of the problems with the building
• CWS failed to implement a disaster plan
• ·The CWS executive director had an “inadequate response” to the state’s findings.

The letter to the Fedcap CEO also said that CWS had been providing “segregated, center-based day services” rather than the community-based programming for which the agency had been licensed.

Summarizing the status of the 2013 Interim Settlement Agreement, the monitor, Charles Moseley, concluded in part that the Providence School Department and the Rhode Island Department of Education have continued to improve compliance through added funding, an emphasis on supported employment, staff training and data gathering and reporting.

Overall, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) the Executive Office of Health and Human Services, (EOHHS) and the state Office of Rehabilitation Services (ORS) also have made progress, Moseley said, citing budget increases, new management positions, and programmatic changes he has mentioned in various status reports on the statewide consent decree.

However, progress for clients of the former TTP workshop “appears to have plateaued and possibly regressed,” Moseley wrote, and for that he faulted the successor agency, CWS, and the lack of sustained oversight on the part of BHDDH. 

While some former sheltered workshop employees at TTP did find work after the Interim Settlement Agreement was signed in 2013, “the number and percentage of integrated supported employment placements has remained essentially flat for the last four years,” he said.

Efforts to reach CWS and Fedcap officials were unsuccessful.

In mid-March, CWS  reported that 30 of 71 clients on its roster had jobs. Of the 30 who were employed, 13 with part-time jobs also attended non-work activities sponsored by the agency. In addition, 41 clients attended only the non-work activities.

In early April, Moseley and lawyers from the DOJ interviewed the leadership and staff of CWS and some of the agency’s clients in their temporary base of operations at the Fogarty Center. Serena Powell, the CWS executive director, was among those who attended, Moseley said.

The leadership “revealed a lack of understanding of the basic goals and provisions of the state’s Employment First policy and related practices,” Moseley said in his report.

Rhode Island has adopted a policy of the U.S. Department of Labor which presumes that everyone, even those with significant disabilities, is capable of working along non-disabled peers and enjoying life in the community, as long as each person has the proper supports.

“This lack of knowledge and understanding appeared to extend to the basic concepts of person-centered planning (individualization) and program operation,” Moseley said, citing the names of specific protocols used by state developmental disability systems and provider agencies “across the country.”

Moseley said some CWS staff do not have the required training to do their jobs.

Some job exploration activities have consisted of “little more than walking through various business establishments at a local mall,” Moseley said, explaining that they were not purposeful activities tailored to individual interests and needs.

Moseley said he interviewed three clients of CWS and they were “unanimous in their desire to have a ‘real job’ in the community and to be engaged in productive community activities that didn’t involve hanging out with staff at the mall.

“All three persons reported that they were pleased to be out of the CWS/TTP facility and to have opportunities to go into the community more often. Two of the three expressed an interest in receiving services from a different service provider,” Moseley said.

The state has had four years to work on compliance with the Interim Settlement Agreement and the Consent Decree. During that time, BHDDH has seen three directors and its Division of Developmental Disabilites (DDD) has had four directors, including an outside consultant who served on an interim basis part of the time officials conducted a search that led to the appointment of Kerri Zanchi in January.

Between mid-February and early May, there was a separate upheaval in the leadership of the Executive Office of Health and Human Services, which had taken charge of the state’s compliance efforts in connection with the 2013 and 2014 civil rights agreements.

In a statement to the court, Zanchi alluded to all the turnover, saying that “progress has been challenged due to changes in internal and external leadership impacting stability, communication, resources, accountability, and vision.” 

Zanchi suggested that budget increases and considerable effort among BHDDH and ORS staff during the last year to improve compliance nevertheless have not been enough to make up for the previous three years of inaction.

Among other things, there is no consensus across the network of private service providers – some three dozen in all – “regarding the definition and expectation of integration,” Zanchi said.

DDD is responding by establishing “clear standards, training and monitoring,” she said. McConnell’s order required DDD to complete “guidance and standards for integrated day service” by June 30 and allowed another month for the document to be reviewed and disseminated to providers.

Zanchi said the state now has an “extensive quality management oversight plan” with CWS that involves DDD social workers, who are actively supporting CWS clients and their families. These same social workers also have average caseloads of 205 clients per person, according to the most recent DDD statistics.

Zanchi agreed with Moseley, the court monitor, that “current review and monitoring does not constitute a fully functioning quality improvement program.”

Moseley said that DDD’s quality improvement efforts “are seriously hampered by the lack of sufficient staff.” He called for “additional staffing resources” to ensure quality, provide system oversight and improve and ensure that providers get the required training.

Zanchi said an outside expert in interagency quality improvement is working with the state to develop and implement such a fully functioning plan. McConnell gave the state until July 30 to have a “fully-developed interim and long-term quality improvement plan” ready to go.

Of the 126 teenagers and adults McConnell said are protected by the 2013 Interim Settlement Agreement, 46 need individualized follow-up. Of the 46, 34 have never been employed, including 24 former TTP workers and 10 current Birch students or graduates.

The judge reinforced the monitor’s repeated emphasis over the last two years on proper planning as the foundation for producing a schedule of short-term activities and long-term goals that are purposeful for each person, whether they pertain to jobs, non-work activities, or both.  

These planning exercises, led by specially trained facilitators, can take on a festive air, with friends and family invited to share their reminiscences and thoughts for the future as they support the individual at the center of the event.

McConnell’s order said the state must ensure that “quality” planning for careers and non-work activities is in place by July 30 for active members of the protected class who want to continue receiving services.

Among CWS clients, the agency reported that 10 have indicated a reluctance to go into the community, perhaps because they feel challenged by the circumstances.

Moseley cited a variance to the Employment First policy developed by the state to cover those who can’t or don’t want to work, for medical or other reasons. Moseley’s report said he approved the variance in 2015, but it hasn’t been implemented. He acknowledged that it was difficult to understand.

McConnell’s highly technical and detailed order requires the state to implement a “variance and retirement policy” by June 30 “to discern specifically those who do not identify with either current or long-term employment goals.” 

McConnell also ordered the state to fund an additional $50,000 worth of training from the Sherlock Center on Disabilities at Rhode Island College so that those who work with adults with developmental disabilities can give them individualized counseling about how work would affect their government benefits.

The monitor has repeatedly cited a dearth of individualized benefits counseling. In his latest report, he wrote that in interviews May 11 and May 12, high school students at Birch, their parents, staff, and others expressed the false conviction that students could work no more than 20 to 25 hours a week without compromising their benefits.

"This finding underscores the importance of individualized benefits planning for this population to ensure that students are able to take full advantage of Social Security Act work incentives that may enable them to work more than 25 hours per week while maintaining their public and employer benefits," Moseley said.

The monitor is expected to evaluate compliance with the deadlines in McConnell's latest order in a future status report.

RI Consent Decree Task Force Wants Feds To Look At Accuracy Of Assessments Used In DD Funding

By Gina Macris

This article has been updated.*

Seven months after Rhode Island state social workers were retrained to better administer a questionnaire used to determine Medicaid funding for adults with developmental disabilities, signs have emerged that not all the interviewers may be conforming to the highly scripted assessment process.

On June 13, the chairman of the Employment First Task Force said the group needs more comprehensive information about any continuing problems with the assessment, the Supports Intensity Scale (SIS). He said he will make a request in writing to the U.S. Department of Justice and a federal court monitor, asking them to look into the situation.

Rhode Island is in the fourth year of implementation of a 2014 federal consent decree asserting the rights of adults with developmental disabilities under provisions of the Americans With Disabilities Act to obtain the services they need to secure jobs and enjoy non-work opportunities in the community.

The consent decree is “very clear” on those rights, said the federal court monitor, Charles Moseley, who listened into the meeting in a conference call.

Moseley said he was “disturbed” to hear an account of a SIS interviewer who said that because a young man was employed, even part time, he could not have the extensive behavioral and medical supports that family members and the service providers said the man needed. In fact, without those supports, the young man could not keep his job.  The task force member who addressed Moseley by telephone in the meeting later asked not to be identified.

Another task force member, Claire Rosenbaum, Adult Supports Coordinator at the Sherlock Center on Disabilities at Rhode Island College, recalled two SIS interviews she has attended since the social workers administering them were re-trained. One was done very well. In the other, the SIS supervisor corrected the interviewer twice.

For example, an interviewer may ask whether certain behavioral problems occur, or whether they have occurred in the last year. But Rosenbaum indicated that the proper phrasing for the SIS is to ask what supports are necessary to prevent those behavioral problems.

The latter approach acknowledges the impact of existing supports in helping adults with developmental disabilities enjoy a better quality of life, something parents and providers had routinely complained was missing from the SIS before the interviewers were retrained.

*(On June 15, Claire Rosenbaum said her comments were not intended as criticism of the SIS interviewers but to make the point that the retraining of interviewers was followed up with supervisory coaching as reinforcement. The two SIS interviews she attended were appropriately administered, she said.  She said her comments, while intended to be positive, did not preclude the possibility that an interviewer or two may not be immediately absorbing the training and coaching provided).

SIS Has History of Controversy in RI

The way Rhode Island uses the SIS to establish funding has been criticized both by the monitor and the DOJ since 2014, when Justice Department lawyers found that there was at least the appearance of a conflict of interest because the agency which administers the questionnaire also allocates individual funding.

Since then, the fiscal arm of the agency which administers the SIS, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) has been transferred to the Executive Office of Health and Human Services (EOHHS).

But Kevin Nerney, the Task Force chairman, said that to the average Rhode Islander, “the state is the state.”  Task Force members floated the idea of having a non-state entity administer the SIS assessment.  

The American Association of Intellectual and Developmental Disabilities, (AAIDD), which developed the SIS, has urged states to avoid even the appearance of a conflict by making a clear separation, or firewall, between the actual interview and the allocation process.  

A U.S. District Court order issued in May, 2016, required the state to change its policy to specify that the  scores on the SIS will be “consistent with individuals’ support needs, separate and apart from resource allocation considerations.” 

Moseley, the monitor, in reporting to Judge John J. McConnell, Jr., earlier this year, the monitor, Moseley, took that idea a step further. In conjunction with bringing greater individualization to supports for adults with developmental disabilities, he has ordered the state to give him quarterly progress reports as it works toward changing its approach to determining needs and funding.  Instead of translating SIS scores into one of five funding levels, as it does now, the state should use the interview results to first draw up individual programs of support. Only then should it apply funding, according to the model envisioned by the monitor.

Meanwhile, Nerney, the Task Force chairman, said outside the Tuesday meeting that the group has repeatedly asked BHDDH over the past two years – without success - for the number of appeals filed by providers or family members contesting funding levels resulting from the SIS.

While that number has not been made public, state Sen. Louis DiPalma, D-Middletown, disclosed in a Senate Finance Committee hearing in April that the appeals generate a total of $21.5 million to $22 million a year in supplemental payments above and beyond the levels determined by the SIS. That amounts to about 10 percent of all payments made to the private agencies that provide most of the services.

Ten percent is too high, DiPalma said, urging BHDDH officials to rework the way they use the SIS.

Consent Decree Allows Exceptions to 'Employment First'

The Task Force also discussed various approaches to developing a variance process under provisions of the consent decree for individuals with developmental disabilities who can’t work or don’t want to work because they fear the challenges of the regular employment.  Language for one or more kinds of variances or exceptions is being drafted, task members reported.

In conjunction with an interim settlement between the City of Providence and the DOJ in 2013 and the subsequent statewide agreement in 2014, the state has adopted an “Employment First” policy which assumes that adults with developmental disabilities can work at regular jobs, with support.

This policy generally has been welcomed by young people, particularly those who have had internships as part of their special education programs in high school and looked forward to working as adults. 

But that reaction has not been universal.  After the policy was adopted in 2013, BHDDH abruptly closed most sheltered workshops without having any plan in place to gradually acclimate those clients to community-based services. The move generated a wave of anger from families whose loved ones had enjoyed the social aspect of the workshops and took pride in their paychecks, even if they were a fraction of the minimum wage. 

Since Governor Gina Raimondo beefed up the state’s response to the consent decree in 2016, various high-ranking state officials have made public assurances that no one will be forced to work if they don’t want to or are unable, contrary to what some families say they have heard from rank-and-file employees in the developmental disability system. 

In a task force discussion on Tuesday of what a variance to the “Employment First” policy might look like. Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, said she understands that some families are turning to segregated adult day care programs for their loved ones that are outside the system licensed by BHDDH. 

These adult programs, licensed by the Department of Health, may take private payments or federal Medicaid funding, according to anecdotal remarks by various task force members.

Moseley, the monitor, said that if Medicaid funding is involved, federal regulations emphasizing community-based services, similar to those of the consent decree, would apply. Both the consent decree and Medicaid regulations governing Home and Community Based Services (HCBS) derive their authority from the 1999 Olmstead decision of the U.S. Supreme Court. The High Court said that individuals with disabilities must be offered services in the least restrictive environment that is therapeutically appropriate, and that environment is presumed to be the community.

Kiernan O’Donnell, co-president of the Rhode Island Association of People Supporting Employment First, said that if families had more information, they wouldn’t be going to segregated programs.

The Task Force, meanwhile, discussed the importance of planning around the individual needs of a particular person. While the principal goal may be employment for one person, it may be health for another, said Deb Kney, director of Advocates in Action.

Planning is a “process. It’s not a form” for checking boxes, she said. Others agreed.

The Employment First Task Force was created by the 2014 Consent Decree to serve as a bridge between the community and state government, with membership drawn from community agencies serving adults and teenagers with developmental disabilities, those who receive services and advocate for themselves, and families. Nerney, the chairman, represents the Rhode Island Developmental Disabilities Council.

RI DD Service Providers Could Do Same Job for 13 Percent Less Money, Said 2011 Memo To Assembly

By Gina Macris

This article has been updated.

In a single day in 2011, the Rhode Island General Assembly slashed about $26.5 million, or 12.7 percent, from payments to private agencies which care for adults with developmental disabilities, some of the state’s most vulnerable citizens.

The massive cutback sent the privately-run developmental disability service system into a tailspin from which it has not yet recovered, even though the dollar amount has been restored.

Documents obtained by Developmental Disability News through public records requests indicate that the budget cutback was based on an unsupported assumption that the private agencies could uniformly deliver the same level of service with far less money.

Moreover, the records show how Project Sustainability, a set of regulations designed to assess the needs of persons with developmental disabilities and assign them a dollar value for services, seemed to function instead as an attempt to control spending – albeit with questionable success.

Today the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) spends more than $21 million a year to “supplement” funding authorizations for individual clients made through Project Sustainability. The supplemental payments amount to about ten percent of all the reimbursements the state makes to the private agencies. Much of the supplemental funding occurs when families and providers appeal the funding determinations successfully, making the case that the original authorizations were inadequate to provide needed services.

A spokesman for House Speaker Nicholas Mattiello defends Project Sustainability, saying that it’s brought accountability to disabilities spending.

Larry Berman said that “Project Sustainability changed a system that did not have a consistent payment model, could not provide information about what services were being provided or in what setting, and if any services were actually provided. It created a new billing system that could account for that.”

“All providers are paid uniform rates for the same services,” he said. Previously, each agency negotiated with the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.) a monthly stipend for a bundle of services for each client.

Since 2011, the General Assembly has added $47 million to services for adults with developmental disabilities, Berman said.

Berman rejected the notion that the General Assembly contributed to conditions which led to a 2014 consent decree with the U.S. Department of Justice and ten years of federal oversight of the state’s developmental disability system, which ends in 2024. 

Findings of the U.S. Department of Justice

In findings that led to the consent decree between the state and federal government, however, the DOJ linked Project Sustainability with violations of the Americans With Disabilities Act (ADA).

It said Project Sustainability restricted individuals’ access to regular jobs and non-work activities in the community – opportunities for choice that are guaranteed under Title II of the ADA.  The U.S. Supreme Court re-affirmed Title II in its 1999 Olmstead decision, saying that individuals with all types of disabilities are entitled to receive services in the least restrictive environment that is therapeutically appropriate. And that environment is presumed to be the community.

In its findings, the DOJ noted that the “precipitous state budget cuts in 2011” exacerbated the problem of retaining qualified staff – a problem that today is described by providers as a “crisis”, despite an incremental pay raise to direct-care workers adopted in the current budget. Workers would get a second small raise in the next fiscal year, according to the budget proposal of Governor Gina Raimondo.

RI Allowed Less Money Than Provider Costs

To understand how the BHDDH budgeting process got more than $20 million off course, a history of Project Sustainability is in order.

In 2011, then-Governor Lincoln Chafee recommended $10 million to $12 million in cuts to developmental disability services, but the leadership of the General Assembly wanted bigger reductions. It first sought to limit eligibility, but backed off when an outside healthcare consultant under contract to BHDDH advised against it, according to a memo obtained through a public records request.

The consultant, Burns & Associates, said restricting eligibility would probably violate the federal “maintenance of effort” requirement for federal Medicaid funding and would not be approved by the Centers for Medicaid and Medicare Services.  All developmental disability services are funded through the federal-state Medicaid program.

Five days after that opinion, dated May 26, 2011, BHDDH sent the General Assembly a memo describing a “methodology” for steep cuts to dozens of reimbursement rates, most of them between 17 and 19 percent below a target rate that was established after a year’s research that included data from the providers themselves on their costs. In undercutting that “target” rate, BHDDH said that the state could not afford to spend more, the memo said.

“We did not reduce our assumption for the level of staffing hours required to serve individuals,” the memo said.

“In other words, we are forcing the providers to stretch their dollars without compromising the level of services to individuals,” said the memo.

Craig Stenning, who was BHDDH director at the time, recently declined all comment for this article and ended a phone conversation with a reporter before any questions could be asked.

The General Assembly doubled Chafee’s recommended reductions in reimbursements on the basis of a  last-minute floor amendment in the House, after the public had been cleared from the gallery of the chamber, early the morning of July 1, the final day of the General Assembly’s regular session that year. The budgeted reduction was $24.5 million, but the actual cut eventually totaled $26.5 million, according to the state’s figures on actual spending.

The vote also established Project Sustainability, the bureaucratic process - still largely in place today – that the DOJ later found violated the civil rights of clients of BHDDH. The primary elements:

• The Supports Intensity Scale (SIS), a standardized assessment designed to determine needed for an individual to accomplish his or her goalls.
•  A formula or algorithm developed by Burns & Associates to assign funding to individuals according to one of five different levels or tiers, designated by letters A through E. 
• A billing system that requires providers to document face-to-face time with clients in 15-minute increments in order for them to be reimbursed for day services.  

Since 2010,  BHDDH and the Executive Office of Human Services (EOHHS) have paid Burns & Associates about $1.4 million to introduce Project Sustainability, develop the equation, or algorithm, and monitor its use.

DOJ Cited "Seeming Conflict of Interest"

In challenging the state’s treatment of persons with disabilities in 2014, the Department of Justice found, at a minimum, “a seeming conflict of interest” in the way Rhode Island used the SIS as a “resource allocation tool”, because BHDDH both administered the assessment and determined the budgets.

The DOJ findings continued:

“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.”

“Numerous persons stated that this lack of neutrality, and apparent tension between the need to assess the full spectrum of an individual’s support needs and state efforts to cut costs, has negatively. impacted the resources individually allocated to people with I/DD (intellectual or developmental disabilities “Further,” the DOJ said, “we received considerable feedback from parents, family members, advocates, direct support staff, and providers that the individuals administering the SIS lack the training, qualification, or experience working with individuals with I/DD necessary to make resource allocation decisions on behalf of individuals with I/DD.”  

The DOJ also said that “we find that several formative practical and procedural barriers exist under Project Sustainability that contribute to individuals’ inability to access the resources, including funding allocations, that they need to purchase services like supported employment and integrated day planning.”

And the department found inflexibility in the requirement that workers be “face to face” with clients for their employers to receive reimbursement for services. Through the consent decree, the “face to face” provision has been eliminated in a pilot program to help adults with developmental disabilities seek regular jobs in the community.

Families and service providers routinely appealed adverse funding allocations, and many of them were successful, resulting in supplemental payments for a year. But the following year, they received notice that the supplemental payments would be withdrawn, and the appeal process began all over again.

Until Stenning left office in 2015, parents and service providers were denied copies of the actual SIS scores. Some parents have said BHDDH officials told them the questionnaires, developed by the American Association on Intellectual and Developmental Disabilities (AAIDD), could not be released because they contained private propriety information.

That’s changed. Today developmental disability officials have acknowledged that the completed questionnaires are personal health care records that must be made available to patients or their guardians, according to federal law. BHDDH has never released the funding formula. 

Parents also have complained publicly that social workers administering the interviews either argued with them and with providers about their responses or that they wrote down scores different from the ones offered by family members and providers.

AAIDD Defends SIS

Margaret Nygren, executive director of AAIDD,  which created the SIS, said it is a “well-established, scientifically valid, replicable tool” designed to measure support needs, and those who administer it must complete a “very rigorous training program” that includes an “annual recheck to make sure they are not drifting what we are training them to do.”

“It is certainly possible someone could get through the training and not apply what they’ve learned,” she said. “It’s not the kind of thing we’d like to see happen,” Nygren said. But she suggested it would be the rare exception rather than the rule.

In December, 2015, Wayne Hannon, then Deputy Secretary of EOHHS for Administration, tried to get a handle on the amount of money that BHDDH spent on supplemental payments outside the regular funding authorization process. These supplemental payments are not reflected as a separate line item in the budget.

Hannon asked Burns & Associates to figure out how much money the state could save if all the supplemental payments were eliminated. In a nine-page memo, the consultants concluded that the state could save a total of $13 million if all the supplemental payments were curtailed, but they stopped short of recommending such a move, saying they did not have enough information to know if the supplements were in fact warranted or used.

In the analysis that led to the conclusion, Burns & Associates' figures suggested there was a great deal of variability in SIS scores, even though the needs of particular individuals usually can be expected to remain fairly constant over time. For example, about 40 percent of those who had been assessed twice over a three-year period, or 726 of 1,798 individuals, had a change in funding levels the second time around, according to the consultants. In a smaller sample of 599 individuals, Burns & Associates said about 54 percent of funding authorizations decreased and the remainder increased.

AAIDD’s Nygren, who saw the memo, said the changes have to do with the funding algorithm created by the state, not the SIS itself. A small change in SIS scores could result in a change in funding, depending on how the formula is constructed, she said. BHDDH has not responded to requests for the formula. 

SIS And Funding Formula Updated    

The extent to which re-assessments generated changes in funding authorizations, whether up or down, raised eyebrows when they came to the attention of state developmental disability officials in the summer of 2016. 

At the time, the state had just promulgated a new policy declaring that the SIS would be administered solely on the basis of an individual’s need for support, in response to a federal court order that had been issued to enforce the consent decree.

 Meanwhile, Jane Gallivan, an experienced administrator of developmental disability services, had just been hired as a consultant and interim director of developmental disabilities. 

 Gallivan later recommended the state switch to an updated version of the SIS, which she said she believed would be more accurate in capturing clients’ needs, particularly for those requiring behavioral and medical supports. Burns & Associates also was re-hired to re-tool the funding formula.

The conversion to the so-called SIS-A included the retraining of all the interviewers and was launched in November, 2016, in the hope that the number of appeals – and supplemental payments – will come down.  Initial reports on the results of the SIS-A indicate that overall, they result in higher funding authorizations, according to developmental disability officials.

In the meantime, the current BHDDH budget allows for $18.5 million for supplemental payments, but in the first three quarters of the fiscal year the department went $3 million over that authorization, according to a recent House fiscal presentation. And Governor Raimondo seeks $22 million in supplemental payments in the fiscal year beginning July 1.

Taking in these numbers on overruns in the supplemental payments at a recent Senate Finance Committee hearing, Sen. Louis DiPalma told BHDDH officials to “look at the equation” that assigns funding authorizations to adults with developmental disabilities.

DiPalma and Rep. Teresa A. Tanzi, D-Narragansett and South Kingstown, have sponsored companion legislation that would make developmental disability caseload part of the semi-annual caseload estimating conference, used by both the executive and legislative branches of government to gauge expenses for Medicaid and public assistance.

DiPalma also has sponsored a separate bill that would require the SIS to be administered by an independent third party to avoid even the appearance of a conflict of interest.

AAIDD recommends that states take steps to ensure “conflict-free” administration of the SIS, a point noted by the DOJ in its 2014 findings.

Court Monitor Has A Say

The independent court monitor in the implementation of the consent decree would go a step further and uncouple the SIS from the funding mechanism altogether.

The monitor’s reports to the U.S. District Court say the SIS should be used for “person-centered planning,” a bedrock principle of the consent decree, which puts the focus on the needs and preferences of individuals, rather than trying to fit their services into a pre-determined menu of choices, as is now the case.

The monitor, Charles Moseley has said the SIS should be used as a guide for developing an individualized program of services, and then funding should be applied to deliver those services. Currently, the funding defines the scope of the services.

Moseley has put the state on a quarterly schedule of progress reports toward implementing “person-centered planning.”                

The changes have as-yet undefined budget implications for the state in the future.

Tom Kane, CEO of AccessPoint RI, a provider, explained to a subcommittee of the House Finance Committee in a recent hearing that it will be inherently more expensive to provide services in the community than it has been historically to have one person working with ten clients in a room in a sheltered workshop or day program.

There is now only slightly more in the private developmental disability system than there was in 2010, he said.  (The General Assembly has approved $218.3 million in reimbursements to private providers for the current budget cycle, or $10.2 million more than was spent in the fiscal year that ended June 30, 2010, according to state budget figures.)

“There are more people in the system” and “the requirements of the consent decree are far more extensive than the kind of supports we were providing,”  Kane said.

He said he’s “definitely in favor” of Governor Gina Raimondo’s budget proposal, which would add $10 million to the system over the next 15 months, but he believes the available funding is only half of what is needed to stabilize private provider agencies and ensuring their clients get the “services they deserve and require.”

RI Legislation Aims For Greater Accuracy And Transparency In Budgeting BHDDH, DCYF Costs

By Gina Macris

Companion bills in the General Assembly would require cost estimates for services to adults with developmental disabilities and children in state custody to become part of Rhode Island’s semi-annual Caseload Estimating Conference, a key budgeting guide. 

The bills, sponsored by Sen. Louis DiPalma, D-Middletown; and Rep. Teresa A. Tanzi, D-Narragansett and South Kingstown; specify that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Department of Children, Youth, and Families. (DCYF) would submit all their service costs, funded through Medicaid, to the Caseload Estimating Conference. 

Both BHDDH and DCYF have been plagued by chronic deficits. At BHDDH, a 2014 federal consent decree enforcing the 1999 Olmstead decision of the U.S. Supreme Court is putting additional demands on the developmental disabilities budget.

The executive branch prepares BHDDH budgets on the basis of “target” figures set by the Office of Management and Budget. In the past, BHDDH officials have said that the targets are not enough to cover actual service costs. This year, Governor Gina Raimondo accepted BHDDH figures in submitting her budget proposal to the General Assembly.

In a statement, DiPalma said, “The legislation is about honest and transparent budgeting. We need an accurate accounting of how many individuals we are serving in these vital programs, so that our budget reflects the associated costs, or makes program adjustments, or both.” 

He said about 3,000 children and teenagers are in DCYF care and roughly 4,000 adults with developmental disabilities depend on services from BHDDH.

Tanzi said, “Accurate caseloads will ensure the General Assembly is able to fully understand and appreciate the budgetary requirements of the agency to meet their obligations to our state’s vulnerable children and families. This legislation is about caring for our most vulnerable citizens but doing so in the most responsible way for the taxpayers.”

Medicaid accounts for about 31 percent of the state’s budget, according to the House Fiscal Office. That is roughly $3 billion in expenses annually, with each state dollar matched by slightly more than one federal dollar. Of all Medicaid funds, BHDDH spends 12.3 percent of and DCYF accounts for 1.4 percent.

In addition to adding BHDDH and DCYF to the Caseload Estimating Conference, DiPalma’s and Tanzi’s bills spell out the managed care reporting requirements of EOHHS in greater detail.

Current law allows agencies other than DHS and EOHHS to participate in the Caseload Estimating Conference but does not require them to contribute data.  It is not clear why DCYF and BHDDH have not been included in the Caseload Estimating Conference in the past.

The Caseload Estimating Conference runs back-to-back with the Revenue Estimating Conference in November and May. There are three principals; the House and Senate fiscal advisors and the state budget officer, who reach agreement through consensus on the latest estimates for revenue and for expenses in the human services, including Medicaid and a general public assistance program of about $1.5 million.

The governor relies, in part, on the November conference report to prepare the budget that is submitted to the General Assembly in January. The House and Senate use the results of the May conference as a basis for finalizing budget negotiations. 

The bills: S 0266 and H 5841

RI Still Lags in DD Consent Decree Compliance, But Shows Progress In Number of Job Placements

By Gina Macris

Rhode Island appears to be meeting almost 60 percent of court-mandated goals in placing adults with developmental disabilities in jobs paying at least minimum wage, according to newly-released figures which track the state’s progress through Sept. 30 of 2016.

The state had found jobs for 363 individuals, or 58.8 percent of the 651 placements required at that time, according to compliance figures the state submitted to an independent court monitor in accordance with a 2014 federal consent decree that requires community-based day services to correct violations of the Americans with Disabilities Act.

For one group of individuals protected by the consent decree- those in segregated day programs – the state has made triple the number of required placements. But for other groups, the going has been slower. Only about 22 percent of special education students "exiting" high school got jobs, far short of the 100 percent employment goal. The figures for a third group - adults who had been in so-called sheltered workshops – show 87 percent compliance with the benchmark for job placement at the end of September.

Source: State of Rhode Island 

Figures at the bottom of the table, set against a pale blue background, allow comparisons among the latest available job placement numbers Sept. 30 and those at the end of the first and second quarters of 2016.

It’s not surprising that the state does not meet overall compliance with the consent decree, Rhode Island began focusing on compliance only in the last 12 months – two years after the agreement went into effect,

In May, 2016, Judge John J. McConnell, Jr. of U.S. District Court reinforced the consent decree with an order addressing numerous shortcomings, including an inability to even get an accurate count of the number of individuals protected by the agreement.

McConnell required the state to create a “live” database, always up-to-date, on the population protected by the consent decree – at latest count 3,456 teenagers and adults – that the monitor and the U.S. Department of Justice could use to gauge compliance.

Such an up-to-the-minute database is in the works but has not yet been completed. In the interim, the  Executive Office of Health and Human Services has coordinated a cooperative effort involving three state agencies and the Sherlock Center on Disabilities at Rhode Island College to connect different sources of data so that the state can make detailed reports to the court, albeit with a time lag. The three state state agencies participating in the combined data effort are the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals; the Department of Education, and the Office of Rehabilitation Services.

The ten-year consent decree has progressively stiffer requirements, with the latest deadlines occurring Jan. 1. It is not yet known how well the state has done against these most recent benchmarks.

 Charles Moseley, the monitor,  has concluded that the state has “significantly improved its ability and capacity to gather, aggregate and analyze” data required by the consent decree.

Moseley submitted the state’s figures to McConnell March 3, supplementing two earlier reports. One made recommendations on stepping up job placements and other aspects of compliance. .The other made sweeping recommendations that would put emphasis on the needs of of individuals in the funding process for developmental disability services and would reorganize operations of the state Division of Developmental Disabilities to incorporate a seamless and continual quality improvement effort. Both reports have implications for greater costs.

All of Moseley’s recent reports are likely to come up during the next open-court hearing on the consent decree, now scheduled for 10 a.m. March 10 before McConnell. (Two hearings in January and February had been cancelled.)

The progress the state reported as of Sept. 30 reflect the efforts of privately-run service providers who for years have been working under significant financial and bureaucratic constraints that make it difficult for them to hunt for jobs for clients and support them once they find employment. 

Front-line workers make poverty-level wages, despite a pay increase approved by the General Assembly in 2016. The legislature also set aside $6.8 million to pay bonuses for new job placements and job retention and for specialized training completed by direct care workers. But that program was still on the drawing boards when the latest data was collected.

In his report on data, Moseley noted that the state did not reach goals for career development plans and benefits counseling. Benefits counseling is necessary to ensure individuals make informed choices about the way particular jobs would affect their government benefits, like supplemental security income (SSI.) Career development plans consider long-range goals, and the intermediate steps necessary to achieve them, in a way that aligns activities with individuals’ needs and interests.

Overall, about 43 percent of the entire consent decree population had career development plans. In one of the earlier reports to McConnell, Moseley was critical of the quality of those career development plans. 

Source: Charles Moseley, U.S. District Court Monitor

In the table above, "youth transition" refers to high school special education students likely to qualify for adult services, and "youth exit"refers to adults who have left school since 2013. Other categories refer to older adults who historically have been in segregated day programs or sheltered workshops. The letters CDP are an acronym for career development plan. 

Another table, below, shows that the state had complied with a requirement to provide benefits counseling to young adults with jobs but had failed to similarly advise more than half of older adults who had obtained jobs after 2012. The letters BP are an acronym for benefit plan.

Source: Charles Moseley, U.S. District Court Monitor

The state reported that those who had jobs worked an average of nearly 12 hours a week and made an average of about $10.00 an hour. The consent decree says the average work week should be 20 hours.  

The consent decree requires the state to integrate adults with developmental disabilities in their communities to comply with the 1999 Olmstead decision of the U.S. Supreme Court, which reaffirmed the rights of citizens with disabilities to receive services in the least restrictive environment that is therapeutically appropriate under provisions of the Americans With Disabilities Act. In Rhode Island in 2014, the U.S. Department of Justice found an over-reliance on sheltered workshops paying sub-minimum wages and on isolated day programs that did not offer their clients purposeful activities.

Click here for the monitor's data report.

Click here for the data the state submitted to the monitor.

Monitor Wants Mountains of Details to Push Compliance With RI Olmstead Consent Decree

By Gina Macris

If the state of Rhode Island were building a network of roads to help adults with developmental disabilities get to their jobs, town libraries, or classes at the local Y, then construction could be described as well underway.

But that’s not to say the infrastructure is complete and travelers are rushing to use these new highways on their way to richer lives. 

This image of a work in progress serves, in effect, as a snapshot of what a federal court monitor sees in an ongoing transformation of the state’s developmental disability service system. 

In a recent report to U.S. District Court Judge John J. McConnell, Jr., Charles Moseley says Rhode Island has made solid gains in its efforts to comply with a 2014 consent decree enforcing the Olmstead decision of the Americans with Disabilities Act, which requires disability-related services to be offered in the least restrictive setting that is therapeutically appropriate. And that setting is presumed to be the community. 

The state has increased funding by $11 million, filled key leadership posts, offered more training, and put into place policies and programs to help adults with developmental disabilities find jobs and enjoy activities in their communities.

Priorities for Compliance 

 While acknowledging these efforts, Moseley indicated the state is still out of compliance with the consent decree. Among his top recommendations, Moseley said the state must:

• Strengthen supported employment for young adults up to the age of 25. Job placements for young adults are “significantly below consent decree requirements,” he said.

• Increase funding to expand supported employment and community-based, integrated day services during the next fiscal year, beginning July 1, and in future budgets. The state “needs to take steps to ensure additional funding is available to address caseload increases” related to special education students moving to adult services, he said.

• Increase providers’ capacity to provide services. “Provider agencies do not yet have the numbers of trained staff needed to ensure the provision of services and supports required by the consent decree” Moseley said.

• Eliminate service delays.

Moseley says the Division of Developmental Disabilities (DDD) and the Office of Rehabilitative Services (ORS) have said that service providers can meet the need for employment and community –based supports required by the consent decree.

“But families of individuals with IDD (intellectual or developmental disabilities) who are requesting DDD services for the first time have reported to the monitor that access to needed supports has been prevented or delayed by providers who refuse to accept new referrals,” Moseley said.

“Provider refusals appear to be directly linked to DDD payment rates and rate setting practices,” he said.

Twenty-two of the state’s 36 private service providers have agreed to participate in a program of one-time bonuses paid for staff training, job placements, and job retention, according to state officials. 

That initiative is still accepting applicants and cannot yet be evaluated, Moseley said, although it is expected to ease the service gap over time.

Moseley found it “important to note,” however, that the state has not offered any other kinds of incentives to agencies that chose not to apply to the incentive program, or to providers that did not receive start-up costs to convert sheltered workshops and day programsto community-based operations.

Moseley is asking the state to give him an accounting by Feb. 28 of the number of clients who were refused or faced service delays between July and December of 2016, including the names of the agencies, the reasons given, the length of any delay, and the state’s recommendations for improving access to services.

He also gave notice that he will want a similar report for the three-month period between January and March, as well as another update at the end of June to use as a guide in determining whether recent initiatives put into place by the state are having a positive impact.

State is Playing Catch-up

Moseley submitted a 48-page report to McConnell Jan. 25 in anticipation of a hearing Feb. 14 on the status of the consent decree.

The state’s positive momentum, supported by the $11-million budget increase, is all the more significant because most of it has been accomplished in the year since McConnell became personally involved in the enforcement of the consent decree in January, 2016.

After McConnell signaled he would take the bench on the case, the direct day-to-day supervision of the developmental disabilities division has shifted from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals to Jennifer Wood, Deputy Secretary of the Executive Office of Health and Human Services.

Even though Wood has put efforts to comply with the consent decree into overdrive, the state is still playing catch-up with the progressively stiffer requirements of the highly prescriptive agreement, which was marked by two years of inactivity at the outset.

The consent decree, signed April 8, 2014, has a ten-year term. At the end of 2015, seeing little progress, the U.S. Department of Justice and the court monitor asked McConnell to take the case under his wing.

During the most recent hearing, in September, 2016, the state avoided contempt proceedings for failing to hit two targets. One of them, the disbursement of raises for direct service workers, was accomplished Oct. 1. The other was the lag in employment of young adults – a problem that has only grown bigger.  At the same time, McConnell said he relied on Moseley to hold the defendant’s “feet to the fire.”

Moseley Wants More Information

Even at the September hearing, Moseley was digging deeper. He pressed the state to better identify young adults and high school special education students who should be counted as members of the consent decree population and enjoy protections designed to prevent them from living lives of isolation.

Moseley’s report relies on data available as of Oct. 31, but he says the state subsequently informed him that the count of young adults who left school since the 2013-2014 academic year has increased by 350, from 151 to 501. 

The report says 29 of these young adults have received job placements, a number that is more than six months old. The consent decree required “all” members of this group to have at least part-time jobs by July 1, 2016.

The monitor continues to press DDD, ORS, and the Rhode Island Department of Education (RIDE) for more detailed information on several areas of implementation where he sees the state lagging.

By Feb. 28, Moseley wants reports on:

 Staff Training

• a plan outlining how DDD and ORS will provide the monitor regular updates on appropriate training for direct service workers at various agencies who provide daytime services. The current number of trained staff statewide, 396, is too low, he says.

Average Hours Worked

• a plan and strategy for increasing the average number of hours per week worked by individuals in supported employment. The current weekly average, 8.6 hours, falls far below the average 20 hours specified in the consent decree.  Implementation of the plan should begin March 1, Moseley says.

Career Development Plans

• an umbrella “operational plan” for 1) expanding critically-needed training for professionals and families on career development,  2) ensuring more than 3,000 individuals protected by the consent decree have high quality career development plans by June 30, and 3) making provisions for regular updates to the monitor on this topic beginning April 1. Currently, 774 individuals have career development plans, according to Moseley’s data.  These plans are intended not only to describe individualized long-term goals, but to include strategies and a sequence of real-life activities for helping individuals work toward those targets. Moseley said there are signs such details are lacking from many existing career development plans.

High School Internships

• data from RIDE and ORS showing the number of high school special education students who participate in at least two trial work experiences, each lasting a minimum of 60 days. RIDE has indicated it is keeping track of these numbers but has yet to provide the monitor with the information, Moseley says.

• data from DDD showing implementation of a so-called “transition timeline”, including notifications to families and other activities involving special education students in high school that prepare them for adult living.

Benefits Counseling

• a report from DDD on how it will ensure individuals deciding on jobs receive counseling about the way their earned income might affect the government assistance they receive, as well as evidence that the counseling is covering the required information. The monitor found that only 65 people had benefits counseling last June 30, the latest date for which statistics were available.

Moseley also noted that the state has developed a process for individuals to seek a variance if they want to opt out of employment, but no one has applied for one. He said he have more to say about the variance process by the end of the month but wants recommendations from the state by March 31 on ways to improve the variance process.

Employment First Task Force

Moseley addressed the future of the Employment First Task Force, saying it “has the potential to provide an independent and meaningful role in supporting the ability of the State to accomplish the reforms identified by the consent decree." 

“But change needs to take place if the task force is to achieve its full potential,” he said.

The consent decree intends the task force as a bridge between the community and the government, or as Moseley put it, “an independent, voluntary group of advocates and stakeholders who are not directly involved in state agency operations.”

While the consent decree says the group should make policy recommendations, it doesn’t say what areas the task force should research, or to whom it should make its recommendations, said Moseley. He also noted that it has no administrative staff or oversight from any state agency.

Moseley said he wants some changes in the task force “without compromising the separate and independent voice of advocates and stakeholders.”

Ultimately, he wants the task force to make annual reports for the monitor, the state, and the public on barriers to implementing the consent decree and ways to overcome them.

Moseley called on EOHHS to give the task force some staff support. And he asked Kevin Nerney, the task force chairman, and Jennifer Wood, the Deputy Secretary of EOHHS, to convene a small work group to map out the respective roles and responsibilities of the state and task force members and to report back to him by Feb. 28. 

Click here to read the entire monitor's report.

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

By Gina Macris

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

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

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

Einloth                                                             photo by anne peters

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

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

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

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

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

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

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

O'Donnell          Photo by anne peters 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kerri Zanchi, Former Massachusetts Rehabilitation Official, Named DD Director for Rhode Island

By Gina Macris

Kerri Zanchi, a former high-level developmental disability service official in Massachusetts, has been named Rhode Island’s Director of Developmental Disabilities in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Zanchi, who has past ties to Rhode Island, begins her job here Jan. 23, according to Rebecca Boss, acting director of BHDDH.

 “We are certain that she’ll be a strong leader and we look forward to introducing her to you at our upcoming community forums” in February, Boss said.

“She has focused on quality services that encourage independence as well as community integration.” 

Boss said Zanchi embodies four characteristics at the top of the list of qualities identified in community forums held before the search: 

• ·  hands-on experience with individuals living with developmental disabilities
• ·   experience with government
• ·  a deep understanding of how Medicaid works
• ·  good communication skills

Zanchi, meanwhile, issued a statement saying she accepted the job because of the “tremendous opportunity” and “strong commitment” on the part of state leaders “to transform the development disability system to deliver high quality services that individuals and families deserve.”

She praised the “strong vision and clear goals” guiding the work of the developmental disability leadership team and said she found the community “engaged, with much expertise to offer as this work unfolds.”

“I look forward to partnering with individuals, families, the community and my colleagues in government to build on this momentum and move the service system in a direction that results in better services, better outcomes and more opportunities for all Rhode Islanders living with developmental disabilities,” Zanchi concluded.

Her salary will be $102,860, according to a spokeswoman for the Executive Office of Health and Human Services (EOHHS).

Zanchi, 43, is a native of Massachusetts who grew up in East Lyme, CT. She began her career working directly with adults with developmental disabilities in Rhode Island and received her master’s degree in social work from Rhode Island College in 1999.

After completing her studies, she worked at the administrative level in both the public and private sectors in Massachusetts, rising in 2014 to Assistant Commissioner of the Massachusetts Rehabilitation Commission, one of several agencies falling under the jurisdiction of that state’s Executive Office of Health and Human Services.

The Commission provides an array of services that promote empowerment and independence for individuals with disabilities, according to its mission statement. As Assistant Commissioner, Zanchi provided leadership and advocacy for six departments of state government focused on community living, covering the gamut of concerns from consumer issues to independent living, assistive technology, protection from abuse and specialized services for individuals with brain injuries, according to a resume released by Rhode Island officials.

The resume says she implemented performance management practices and contributed to cross-agency collaboration. These issues are relevant in Rhode Island because of the demands of a 2014 consent decree that requires various state agencies to work together to  desegregate daytime services for adults with developmental disabilities following specific goals set by the U.S. District Court. 

Zanchi left Massachusetts government in the fall of 2015, according to the Massachusetts Rehabilitation Commission’s annual report that year. She became Associate Executive Director of the Center for Living and Working, Inc., based in Worcester, leading the organization through a restructuring that emphasized staff development, quality improvement and performance-based outcomes.

In addition, she served as Coordinator of the Massachusetts Aging and Disabilities Resource Consortium for five partner agencies in central Massachusetts, strengthening community and provider collaborations, according to the resume.

Zanchi will succeed Charles Williams, who retired as Director of the Division of Developmental Disabilities last July 22.

The current budget for the Division of Developmental Disabilities is $246.2 million, providing services for a total of about 4,000 adults with intellectual and developmental disabilities, most of whom receive direct care from 36 private agencies under contract with the state.

The division director oversees a staff of about 350 that determines eligibility, the level of individual need, conducts case management, oversees the state-run group home system, and provides administrative support, according to the EOHHS spokeswoman.

It is expected Zanchi will play a key role in shaping the state’s implementation of the 2014 consent decree, which has come under close scrutiny by District Court Judge John J. McConnell Jr., after the federal Department of Justice challenged the state’s progress.

The EOHHS spokeswoman, Sophie O’Connell, said Zanchi “will work very closely with the leadership teams at BHDDH and EOHHS to move forward the Division’s work to achieve the terms of the consent decree and strengthen services for individuals with developmental disabilities.”

O’Connell noted that both the state’s Consent Decree Coordinator, Mary Madden, and the Deputy Secretary of Health and Human Services, Jennifer Wood, served on the search committee for the new director.

In the last year, since McConnell made it clear he would personally weigh in on the progress of the consent decree, Wood has taken the lead in assembling a team of officials to respond to the court’s requirements. She has a legal background in developmental disability law.

Besides Wood and Madden, the search committee for the developmental disability director included Brian Gosselin, Senior Strategy Officer at EOHHS; Jane Gallivan, former interim director of the Division of Developmental Disabilities and a consultant to the state; and Deanne Gagne, CEO/Founder of Bridge Building Services; Coordinator of Advocates in Action; and Assistant Coordinator of the Cross Disability Coalition.

A total of 74 applications were screened. Nine candidates were interviewed initially and four were called back for second interviews. The names of finalists – O’Connell did not say how many – were forwarded to Boss and to Health and Human Services Secretary Elizabeth Roberts, who made the final decision. 

New UHIP Computer in RI Seems to Undermine Court-Ordered Timely Benefits For DD Population

By Gina Macris

andrew whalen                                                  all photos by anne peters

Andrew Whalen, a 31 year-old Rhode Islander on the autism spectrum, applied for support services in the wake of his mother’s death in January. He’s still waiting to hear whether he is eligible.

When a psychologist interviewed him Nov. 16, she said the state’s Division of Developmental Disabilities was backed up addressing cases involved in a federal consent decree and that his application was “not an emergency,” Whalen said.

Last week, one of his sisters took him to the Department of Human Services (DHS) to check on the separate application he filed two months ago for food stamps. He said he learned that the state’s new $364 million computer system had deleted his records and the only way he could remedy the problem was to file for benefits all over again. 

Whalen represents adults with developmental disabilities on the Employment First Task Force, created by a 2014 federal consent decree as a bridge between the state and the community as Rhode Island moves to comply with the Americans with Disabilities Act.

Under terms of the consent decree, Rhode Island must move away from segregated sheltered workshops and day programs toward supported employment in the community and integrated non-work activities over a ten-year period.

Whalen explained his plight Tuesday, Dec. 13, to his colleagues on the task force at a meeting in Warwick, and to the federal court monitor in the consent decree case, who was listening via conference call.

The monitor, Charles Moseley, wanted to know how many applicants for adult developmental disability services might be affected by the computerized Unified Health Infrastructure Project. UHIP, as it is known, is supposed to process all the state’s social service benefits, including the Medicaid money used for developmental disability services.

Sue Donovan of the Rhode Island Parent Information Network (RIPIN) ventured an estimate – about 100 – but asked Moseley to confirm figures with the state. 

RIPIN works with families of high school students with developmental disabilities who are making the transition to adult services. Donovan said she knows of one person who was authorized by BHDDH to start receiving developmental disability supports September 1, but the Medicaid funding didn’t actually didn’t actually clear UHIP until Monday, Dec. 12.

Donovan said there are 23 young adults who have been deemed eligible for developmental disability services who are waiting for their funding to come through. 

In addition, about 83 young people are expected to be found eligible and are “heading for the same problem,” she said.

“I’m sure the Division (of Developmental Disabilities) has a better idea of those numbers,” Donovan said.

“I will look into that,” Moseley said.

“It’s a shame. It’s a disgrace,” Donovan said of the situation.

State Says It Is Monitoring Flow of DD Benefits

On Wednesday, Dec.14, a spokeswoman for Jennifer Wood, Deputy Secretary of Health and Human Services, said that “we are individually monitoring the services received by every DD (developmental disabilities) client who has been determined eligible for Medicaid services to ensure that their Medicaid coverage is working correctly."  She did not offer any figures on those who might be affected by the UHIP problems.

“BHDDH social workers are also always available to their clients if they are experiencing any issues with any of the benefits they are receiving,” the spokeswoman said.

Developmental disability officials have publicly acknowledged in recent months that even without a crisis like UHIP, social workers have a hard time keeping up with the needs of clients in their care. The average caseload for each social worker is 205, according to Jane Gallivan, a developmental disabilities consultant to the state.

Rhode Island has been under a federal court order to see to it that individuals with developmental disabilities receive eligibility decisions and begin services in a timely manner after they complete high school.

In response to the order, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has said that at the end of September, it cleared a backlog of applications that earlier in the year had numbered about 250.

BHSSH also established strict timelines for responding to applicants going forward, determining within 30 days whether they were eligible, needed to submit additional written information, or needed to schedule an interview. 

Whalen’s experience – he waited 10 months to be interviewed by the psychologist – raises new questions about how strictly BHDDH is following its new eligibility timelines, not only for high school students moving to adult services, but for applicants of all ages and circumstances. 

If BHDDH isn’t meeting its timelines because of UHIP, Donovan said, maybe the judge in the consent decree case, John J. McConnell, Jr. of U.S. District Court, can do something to “help move the state to get this DHS system corrected.”

Wood’s spokeswoman declined to address Whalen’s situation publicly, citing confidentiality laws. She insisted that BHDDH is working within court-approved time frames to determine eligibility.

The American Civil Liberties Union has filed its own class action lawsuit against the state in U.S. District Court in the last week over the UHIP troubles with a focus on the food stamp program, saying the denial of benefits puts thousands of households “at imminent risk of going hungry as a result of being denied needed assistance to help them feed their families.”

Bandusky

Ray Bandusky, executive director of the Rhode Island Disability Law Center, told task force members Tuesday that Anne Mulready, one of the center’s managing attorneys, and Linda Katz of the Economic Progress Institute, have met with Governor Gina Raimondo to emphasize the effect the computer problems are having on poor and disabled people.

One of the main points Mulready made, according to Bandusky, was that “the kind of people who need assistance are not going to go online” to fill out a form.

Last week, Raimondo acknowledged that it was a mistake for the human services department to lay off 15 workers and transfer another 30 to the Department of Children, Youth and Families (DCYF) just before it rolled out the new online application process. She has ordered the agency to hire 35 temporary workers to address thousands of applications that are in limbo.

At the task force meeting, Claire Rosenbaum of the Sherlock Center on Disabilities at Rhode Island College said that some of the workers who got “bumped” to DCYF had many years’ experience in resolving the very problems that DHS now faces. That expertise is gone, she said.

Deb Kney, director of Advocates in Action, said that in Whalen’s case, “It took him a couple of months just to be told he had to start over” in the food stamp application process. Advocates in Action employs Whalen to help empower others with developmental disabilities to become advocates for themselves.

A parent on the task force, Mary Beth Cournoyer, said she knows a mother whose son has been found eligible for developmental disability services but who has been “sitting at home for a year” because his family cannot find providers.

After Whelan recounted his problems, Kiernan O’Donnell of the Fogarty Center, a service provider, remarked that “a lot of people focus on transition (to adult services) but people in their twenties, thirties and forties are being marginalized.”

At the same time, he said, providers are still hearing stories of social workers telling clients of  retirement age- in one case an 85 year-old man – that they must seek employment to continue to receive developmental disability services.

O'Donnell said the state's resources would be better spent helping the many individuals who want to find jobs.  

The state’s consent decree coordinator, Mary Madden, has said publicly that no one will force individuals to work. 

Concerns Expressed About Supported Employment Incentives

To satisfy the federal court, BHDDH is planning to roll out a supported employment incentive program in the new year, with a provider fair January 6 that is intended to help individuals seeking employment connect with support services.

The incentive program is funded by $6.8 million for the current fiscal year, but none of it has been spent. 

McConnell, the consent decree judge, had ordered the state to implement a supported employment incentive program by Aug. 1.

Twenty three agencies have applied to provide supported employment services eligible for the incentives, according to Donna Martin, executive director of the Community Provider Network of Rhode Island.

Martin, O’Donnell, and Kim Einloth of Perspectives, another provider, all expressed major concerns about a Catch-22 in the incentive program.  

Einloth said private service providers don’t have the resources to hire new staff and train them to provide supported employment services, but the state’s incentives are bonuses that would not kick in until certain incremental goals were met.

Kim Einloth

For example, Einloth said, the one-time bonus for training a supported employment specialist, $810, does not cover the cost of the training. 

The program is “not sustainable,” she said.

Einloth questioned whether the providers who attend the fair in January will be ready to present themselves to new clients. 

O’Donnell said, “I wonder if they are satisfied with commitment to people they already have,”

Martin replied, “You are spot-on with that, Kie.”

O’Donnell and Einloth, members of the task force, also are co-presidents of the Rhode Island Chapter of the Association of People Supporting Employment First (RIAPSE), which promotes “real jobs at real wages” for individuals with disabilities.

Claire Rosenbaum

Rosenbaum, of the Sherlock Center, offered the perspective of so-called self-directed families, who organize individualized support services for only one person.

While an agency might get $810 after it trains a job developer on the assumption the developer works with ten clients, the family would only get $81, she said.

Because agencies routinely turn away new clients, self-direction has become the only option for many families who otherwise might not choose that route.

Rosenbaum said the advisory sent by BHDDH to providers about applying for the incentive program did not reach all self-directed families, and those who did receive it found it so technical that they couldn’t understand it and set it aside.

Einloth said the self-directed families are not alone. Even for professionals in the field, “it’s been a rocky road trying to understand the plan, because it’s changed so many times.”

The state had a proposed contract for provider agencies, but the contract was “pulled” last week, Einloth said. Nevertheless, a training session for providers on how to submit bills for the reimbursement program will move forward next week, she said.

BHDDH has indicated some money could be available to defray start-up costs, but has never defined that amount, Einloth said.

Martin said she was disheartened that the $6.8 million allocated by the General Assembly for supported employment  remains out of the reach of providers who could deliver results.

Moseley asked Martin to follow up in a separate conversation.

Over the phone, he said he saw “a lot of work” ahead.

Wood’s spokeswoman said Wednesday that it is important to note that the monitor and U.S. Department of Justice approved the supported employment incentive program. .

“We are committed to maintaining an open dialogue and partnership with the provider community moving forward,” said the spokeswoman, Sophie O’Connell.

“As always, we encourage providers and others to share concerns and feedback directly with us so we can work together to address them,” O’Connell said.

(This article has been updated to reflect the fact that the supported employment incentive program passed the review of the court monitor and the DOJ.)

RI Tries To Improve Assessment Used For DD Funding; Families Not Feeling It Yet

Christine Vriend, Senior Trainer for AAIDD

By Gina Macris 

A two-hour discussion about the Supports Intensity Scale, used by Rhode Island to assign funding to adults with developmental disabilities, exposed a big gap between the vision of the professionals who created the assessment and the practical experience of families and service providers who must respond to the extensive questionnaire.  

At the Arnold Conference Center in Cranston Nov. 17, Christine Vriend, senior trainer for the American Association on Intellectual and Developmental Disabilities (AAIDD), explained the newest version of the assessment as a guide for developing better individualized plans of support.

But many family members and service providers described the SIS as a tool for cutting funding. They said interviewers administering the questionnaire have been argumentative and combative, showing little respect for them, while seeming determined to lower assessment scores.

Heather Mincey, administrator of the Division of Developmental Disabilities, said she and other officials are working as hard as they can to make changes.

Mincey

Vriend, said new features of the Supports Intensity Scale are designed to better capture the need for support for exceptionalmedical needs or behavioral issues. 

AAIDD did not design the SIS as a funding tool, but many states use it that way, Rhode Island included. 

In July, in response to a federal consent decree and U.S. District Court order, the state changed its assessment policy in an attempt to separate a determination of what kind of support someone needs from the allocation of money to pay for it. The U.S. Department of Justice and the independent court monitor in the consent decree both have said there was a conflict of interest in having the same agency of state government conduct the assessments and determine the funding.

Most provisions of the consent decree address a shift away from sheltered workshops and isolated day programs to a network of community-based job and leisure activities, in keeping with the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that a reliance on segregated services violates the Americans With Disabilities Act.

Since July, state developmental disabilities officials, under the direction of the Executive Office of Health and Human Services (EOHHS), have begun to re-train their assessors to use the relatively new SIS-A, released by AAIDD in 2015.

One mother, Tammy Russo, had an interview with a newly re-trained assessor last week. She said the assessor collapsed eight questions into one, stringing together references to several types of medical care into a single sentence, making the information sound so complex that she couldn’t follow what was being said.

Russo, however, said the interviewer ultimately gave her a copy of the questionnaire so she could read along as the questions were being asked.

Russo was asked by officials at the forum to follow up on her experience by calling the supervisor of the SIS interviewers.

Ed McLoughlin, another parent, said that in the SIS interview he attended, “the woman clearly was working to get a lower rating.”

Mincey said that kind of feedback has been discussed a great deal: “If you’re not describing exactly what you need and we’re not getting what you need, that information is not part of the SIS.”

The key to answering the questions, Vriend explained, is not to explain what a person can or cannot do but to think about what supports are needed for someone to be successful at a particular activity – even a hypothetical one. Interviewers are instructed to ask all the questions on the form, whether the topics fit an individuals’ current activities or not.

She declined to answer funding-related questions, emphasizing that she works for AAIDD, not the state.

One woman, who declined to give her name, said a mother who knows exactly how to answer questionsin a SIS interview had a “really horrific” experience when her daughter’s funding was reduced from the highest levelto an average level, even though there had been no change in her condition.

“What the mother and the agency had to go through (on appeal) was heartbreaking,” the woman said.

Megan DiPrete, a family member of an adult with developmental disabilities, said it’s her experience that SIS interviews are conducted in a “combative environment.”

“It’s clearly an issue that needs to be addressed, she said.

DiPrete

Another woman spelled out the disrespect she said she witnessed, although she declined to give her name because she works for a direct service provider and is not authorized to speak on the agency’s behalf.

The woman said she asked the interviewer not to speak so fast so that the person under assessment could better follow the conversation. The interviewer refused, saying that if she did so, she would stutter.

Then three people told the interviewer that the person under assessment could not advocate for himself, and the interviewer responded, “Well, he can talk can’t he?”

Vriend likened the discussion that is supposed to occur at SIS interviews as a “table of supports.” The various participants are not supposed to be “butting heads,” she said.

Interviewers have a responsibility to describe the question using consistent language and to help respondents understand the intent of the item, she said. It is important for respondents to be “fully engaged in that process” and provide “perspective and justification for a score.”

All sides should be in agreement with the scores, but if “if you disagree, you should have an avenue to take this further,” Vriend said.

Vriend said AAIDD verification procedures generally confirm the accuracy of the SIS as it is administered in the field. The SIS is used in about half the United States and abroad.

But recurring complaints about the SIS in Rhode Island that have surfaced at public sessions throughout the year indicate there a lack of public confidence in the SIS. AAIDD says public confidence is important in the successful implementation of the assessment program.

In her role as a trainer, Vriend addressed one of the most controversial parts of the assessment in Rhode Island; the need for exceptional supports for individuals for behavioral issues. Those supports can be labor-intensive, and therefore costly. 

She said,  ”We’re not rating the severity of the behavior or how often it occurs. What we’re rating is the support needed to address that behavior or prevent it. If you haven’t had an assault in three years, but one of the reasons is solid support, then we’ve got to recognize that.”

In other public sessions, parents and providers have expressed the view that in some cases, once such exceptional supports are in place and have been given time to stabilize a client, the assessor looks only at the improved behavior. In those cases, all the effort put into realizing those improvements are discounted in the ratings, which lead to lower scores and less funding, they say.

Several suggestions emerged from the audience to help family members and providers feel more confident in the SIS process. They urged the state to put into place several safeguards. Among them:

·         Families and providers should be given copies of the questionnaire so they can read the questions as they are being asked. (On Nov. 18, Mincey issued a statement saying this change will be implemented immediately.)  

·         Families and providers should be informed at the interview that they have a right to appeal and should be given contact information for lodging complaints. They should be asked to fill out evaluation forms on the interviewers

·         Families and providers should be given copies of the completed questionnaires to better understand the scores.

Individuals with developmental disabilities and their guardians have a legal right to their own health care records, including assessments like the SIS, according to the U.S. Department of Health and Human Services.

At the meeting, Mincey acknowledged that families have had difficulty in the past obtaining copies of their loved ones’ SIS results, but she said the Division of Disabilities is now granting those requests.

Mincey referred questions about the SIS to Donna Standish, the SIS supervisor. Standish can be reached at 401-462-2628 or Donna.Standish@bhddh.ri.gov

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

By Gina Macris

(This article has been updated.) 

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

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

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

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

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

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

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

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

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

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

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

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

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

Consent Decree Drives Change

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

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

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

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

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

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

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

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

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

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

General Assembly Increased DD Budget

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

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

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

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

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

The recent wage increases

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

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

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

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

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

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

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

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

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

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

Friends of the Disabled to Hold Forum in Newport on DD Services in Rhode Island

By Gina Macris

Friends of the Disabled, organized by Newport County families who have members with intellectual or developmental disabilities, will host a forum on the future of Rhode Island’s disability service system Wednesday, Oct. 5, from 5 to 8 p.m. at the Newport campus of the Community College of RI. 

Candidates for the General Assembly have been invited to attend and address several questions about adult services that are provided by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), according to Chris Semonelli of Middletown, co-director of the group.  

Most of the issues of concern to the parents are related to a history of declining funding.  The General Assembly, under pressure from the U.S. Department of Justice, the U.S. District Court, and Governor Gina Raimondo, added about $11 million to developmental disabilities for the current fiscal year to comply with a federal consent decree requiring community-based employment and day services. 

Wednesday's program will cover current and future options for both daytime and residential services. 

The consent decree does not apply to residential services, although parents have expressed concern about the future availability of group home placements, which have been hard to come by in recent years. 

Since January, BHDDH has been emphasizing shared living arrangements, in which adults with developmental disabilities live in private homes. BHDDH should provide better supports to families providing shared living, according to Jane Gallivan, who until Sept. 30 served as Interim Director of Developmental Disabilities. 

Judge, DOJ Praise RI's Compliance Efforts In DD Case; Contempt Hearing Avoided, For Now

By Gina Macris

The state of Rhode Island has done more in the last six months to comply with a federal consent decree aimed at ending the isolation of adults with developmental disabilities than the previous state administration did in the first two years of the agreement. 

That assessment came from the U.S. Department of Justice Sept. 16 in a conference on the status of the 2014 agreement before U.S. District Court Judge John J. McConnell, Jr.   

Because of those efforts, McConnell deferred, for now, a request by DOJ lawyer Nicole Kovite Zeitler that he hold contempt proceedings in early October over the state’s failure to hit specific targets in the order McConnell issued last spring to force compliance with the consent decree.

By signing the consent decree in 2014, the state promised, over a ten-year period, to establish a system of community-based, integrated work and leisure activities for individuals with developmental disabilities that would replace sheltered workshops and segregated day programs. The transition is mandated by the Olmstead decision of the U.S. Supreme Court.  

While acknowledging the state’s intensive efforts, led by Jennifer Wood, Deputy Secretary of Health and Human Services, Zeitler cited two non-compliance issues: the scarcity of young adults with developmental disabilities holding jobs, and the state’s failure to distribute increased reimbursement rates to private service providers by Aug. 1 as the judge had required.  

Wood said rate increases would be implemented Oct. 1. That is the date the computer system will be adjusted to reflect a 36-cent hourly increase, from $11.55 to $11.91, in the average reimbursement rate paid to private service providers.  

Approximately 4000 workers at private agencies will get raises, retroactive to July 1, after their employers start receiving the higher reimbursements. 

Mary Madden, the state’s consent decree coordinator, elaborated on the lack of job placements for young adults. 

Of a total of 151 individuals with intellectual disabilities who left school in the 2013-2014 or 2014-2015 academic years, 99 are receiving adult services, including 79 who are receiving employment-related services and 29 who are actually employed, Madden said. 

She did not have data for the 2015-2016 academic year. 

The employment number is “not where anyone wants it to be,” Madden said.   

Of the 151 identified, 52 individuals are not enrolled for any services. 

Later, Zeitler said the notion that 52 young adults have not been connected with adult services is a serious concern. 

Charles Moseley, the independent monitor in the case, said he wanted to echo both Zeitler’s concerns and her praise of the state’s efforts so far. 

He said he “wrestled with the idea of a show-cause hearing,” a proceeding that might lead to a contempt order, but decided against recommending it, because he believes the state can work with him to plan and provide employment services. 

While McConnell noted that a missed deadline in a judicial order is a serious issue, he deferred to Moseley’s confidence that he can work things out with the state. 

“I tend to be a ‘half-full’ kinda guy,” McConnell said, explaining his decision. 

“Some may call me Pollyanna-ish,” he said, but the compliance effort put forth by the state in the last six months “deserves a compliment and a thanks.”  

McConnell said state government doesn’t move quickly, even with court sanctions hanging over its head, as they were after McConnell issued a 22-point compliance order May 18. 

The fact that the Governor and the General Assembly acted late in the legislative season to add $11 million to the developmental disabilities budget should be acknowledged, McConnell said. He also thanked Health and Human Services Secretary Elizabeth Roberts, Deputy Secretary Wood, and her administrative team. About half a dozen of them attended the hearing.  

“We wouldn’t be here if it weren’t for the Department of Justice,” McConnell continued, praising its “tenacity and advocacy in taking on an incredibly complex task for those who wouldn’t otherwise have a voice.” 

But McConnell said he wasn’t about to unfurl a “Mission Accomplished banner” just yet.  

A report that the monitor filed with the court on the eve of the hearing outlines a plan to put the state on short-term deadlines for developing employment strategies for young adults and making sure all those eligible for services are identified. The employment-related strategies are due Oct. 1. 

 Moseley gave the state until Nov. 15 to identify all young adults who have left school in the last three academic years who are eligible for developmental disability services, but he wants to hear how it will approach that problem by Sept. 30. 

The effort will require cooperation by the state Department of Education, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, and the state Office of Rehabilitation Services. 

Moseley has expressed concern that the state is missing those who do not have an intellectual disability but are eligible because of a developmental delay.   Depending on the individual, a young adult on the autism spectrum may fall into the latter category. 

With the average cost of services at about $59,000 a year per person, Moseley’s directive for better identification of eligible young adults has the potential to add significantly to the developmental disabilities budget. 

For example, it would cost an estimated $3 million a year to serve the 52 young adults who have been identified but who are not enrolled in developmental disability services. 

Moseley, meanwhile, reflected on concerns expressed by the DOJ about the need for quality career development planning, a newly-implemented exercise that is intended to drive thoughtful, individualized job searches. 

“Person-centered planning, person-centered thinking, is a challenge that is facing all states. It needs to be done on an ongoing basis,” he said. 

Earlier in the hearing, Deputy Secretary Wood said the new chief employment specialist, Tracey Cunningham, had personally trained more than 200 people in how to write career development plans. 

But Moseley said it’s not a matter of one training. “You have to learn it and live it,” he said.