Federal Monitor Finds “Mixed Results” in RI DD Employment; Urges Expansion Of Efforts

By Gina Macris

A federal court monitor says the state of Rhode Island has had “mixed results” in its efforts to find competitive employment for adults with developmental disabilities as required by a 2014 civil rights decree mandating the state correct violations of the Americans With Disabilities Act.

The monitor, Charles Moseley, has urged the state to take “immediate and tangible steps” to develop the capacity of both state agencies and private service providers “to sustain the high level of training and supported employment activity required by the Consent Decree both now and into the future. “

The state licenses about three dozen private agencies, most of them non-profits, to provide the direct services for adults with developmental disabilities that the state relies on to meet the goals of the consent decree, both for supported employment and non-work activities in the community.

The state has met employment goals for January 1, 2019 in two of three categories of adults with developmental disabilities, those who previously worked in sheltered workshops and those who historically were served in segregated day centers. But the pace of placements has slowed at a time when the requirements of the consent decree are set to accelerate, from 2020 to 2024, according to figures presented by Moseley.

In the first three months of 2019, a total of 18 adults with developmental disabilities landed jobs. That is the second-lowest quarterly total on record for the first five years of the consent decree. The lowest quarterly job placement rate occurred from July through September, 2018, when only 7 individuals got jobs.

Moseley’s report zeroed in on a third category in the consent decree, young adults recently out of high school. The state has never met target numbers for job placements for that group. As of March 31, the number of young adults with part-time jobs stood at 257, or about 62 percent of a population of 412 persons in their twenties.

Moseley said that the state’s performance-based supported employment program, launched in 2017, “did not significantly impact placement numbers” for young adults.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) recently issued a request for proposals for a new iteration of the individualized supported employment program that appears to be tailored to young adults, in that that it seeks clients who have never held jobs.

“We continue to see PCSEPP (The Person-Centered Supported Employment Performance Program) as one of the strategies to increasing employment outcomes,” a BHDDH spokesman said in a statement July 29. “It has provided the state with two years of data-informed outcomes and continues to be responsive to providers’ requests for innovative and flexible resources to promote employment outcomes,” the statement said.

BHDDH set an Aug. 30 deadline for the submission of proposals from private providers, but those agencies have asked for an extension.

At a meeting July 12, representatives of private providers asked for at least three months to plan their programs, because of a requirement that the services reflect a formal collaboration between two or more agencies. The agencies need time to consider structural changes to their operations that may be required by the collaboration, their representatives said.

BHDDH has extended the application deadline to Oct. 4, according to a memo to providers dated July 19.

In his report, Moseley noted that the “state is taking important steps to rebuild the developmental disabilities service delivery system under the Consent Decree.”

He cited efforts by the Division of Developmental Disabilities and the Office of Rehabilitation Services to “establish important links” with providers, families, advocacy organizations and the state Department of Labor and Training to “achieve and sustain supported employment outcomes” among those facing intellectual or developmental challenges. BHDDH is also working with the special legislative commission studying the state’s fee-for-service reimbursement rate, Moseley said. He noted that there has been additional progress in the training of providers’ staff, quality improvement measures and other key areas.

But in a recent conference call with the Employment First Task Force, a community advisory group on implementation of the consent decree, he echoed the conclusion of his most recent quarterly report.

When members of the group thanked Moseley for his work -– he is stepping down as monitor Sept. 30 — and asked him for advice on their recently-completed strategic plan, Moseley said they should focus on one in the plan that concerns providers’ capacity to do their jobs.

Moseley said he has heard “a lot” about adults with developmental disabilities being unable to access any suitable services from a provider and instead choosing to “self-direct.” That means consumers and families design their own programs and hire and supervise staff. The phenomenon has sometimes been called “self-directed by default.”

This is one area that would benefit from a workgroup including providers and state officials to try to “capture” the problem, which can be difficult to document when one family applies to multiple agencies, he said.

Read Moseley’s report here.

(This article has been updated.)

RI “Not Far” From Institutional System Of DD Services, Antosh Tells Legislative Commission

A. Anthony Antosh

By Gina Macris

Other than moving people out of institutional living with the closing of the Ladd School in 1994, Rhode Island hasn’t made life appreciably better for adults with developmental disabilities, according to state’s most prominent academic in the field.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said that every week he gets calls from parents who say how “complicated it has gotten” to deal with state-funded services and “how unstable the system is.”

“Our system is not institutional, but it’s not far from that,” Antosh said. He has been active as an educator and researcher in the field of developmental disabilities since the 1970s and was a plaintiff in a lawsuit that ultimately closed the Ladd School.

If the state transfers control of its services – even partially -- to the people who are served, “you begin to change what the system looks like,” he said. Individuals will become “more responsible for themselves.”

Antosh made the comments May 22 as a member of the Project Sustainability Commission, a special legislative commission studying the current state of developmental disability services. Antosh and other commissioners outlined their reform suggestions at the session.

He zeroed in on a requirement now in place that sets out ratios for staffing according to the degree to which a person is perceived to be disabled – a “naive notion” in his view. The ratios allow one-to-one or small group staffing only for the most challenged individuals and were designed for day care facilities or sheltered workshops.

The funding rule remains in place even though the state in April entered the sixth year of a ten-year agreement with the U.S. Department of Justice requiring it to change to an integrated, community-based system of care. The last sheltered workshop in Rhode Island closed last year.

Antosh said an alternative structure could be a community support team responsible for a certain number of people. The team would figure out how to arrange its time to meet the individual needs of its clients in the community.

DD Council Weighs In

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, also said that he wanted a system “driven by the person and the family.”

There is much talk about “person-centered planning,” he said, but “sometimes, the person is at the center and the other people are doing the planning.”

Nerney recommended that the person receiving services and the family take the lead in drawing up a plan for life in the community. They would be guided by an independent facilitator, not by someone who works for the state funding agency or a private service provider.

The individual and the family would have control over the budget assigned to them and would be able to hire whom they choose to provide paid supports.

Until recently, Nerney said, individuals and families who direct their own services were allowed to use the money allotted to them only to pay for support workers.

Those who choose to receive services from an agency should at least know how much money goes into each category of support, Nerney said.

Antosh, meanwhile, said that funding should be organized by function so that individuals and families have a clearer idea of its purpose.

The notion that plan-making and case management should be separated from the funding agency and the service provider is already embedded in federal Medicaid rules under the title of “conflict free case management.”

“Health Home” Merits Debated

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) wants to set up a Medicaid-funded “Health Home” as an independent planning and case management entity for persons with developmental disabilities.

But some commission members have wondered aloud whether a Health Home would be just another layer of bureaucracy.

And Nerney said most people don’t even like the term “conflict-free case management.”

Antosh agreed that “conflict-free case management” should be made simple. The state should have a list of trained independent facilitators, or “navigators,” as he referred to them, to help individuals and families develop plans and mediate any differences among those contributing to an individual plan.

Individuals and families should have a choice of managing their own services, signing up with an agency, or designing a customized combination of self-directed supports and agency-managed services, he said.

Tom Kane, Left, With Antosh

Tom Kane, who represented a service provider’s perspective, agreed that the people should be in control, with the services following their needs.

To lay the groundwork for real choice, the system should help adults with developmental disabilities “discover their options,” and providers should follow their lead in delivering services, said Kane, CEO of AccessPoint RI.

Kane recommended a concerted statewide marketing campaign aimed at employers that promotes adults with developmental disabilities as an enthusiastic and reliable workforce.

Several other recommendations from Kane echoed recurring issues among members of the commission including:

• A need for funding that reflects the real costs of services, as well as salaries that will attract and retain talented employees. Recommendations that arise from the review of the funding model and rates that is now underway should be presented to the General Assembly “without edit,” Kane said, and should be used as the basis of funding a new system. He noted that the last review came up with recommendations which the legislature never used.

• Concerns about a lack of housing options

• A need for consumers’ access to technology to help them achieve the greatest independence possible.

A Call For A More Stable Funding Cycle

All the commission members, except Antosh, favor annualized budgets for individuals. Antosh said arrangements should be made in two-year increments for funding and services. He also said that there should be a single streamlined application process, no matter the source of the funding, which may come from BHDDH, the Office of Rehabilitative Services, or the Department of Labor and Training.

Families of youngsters deemed eligible for adult services while they are still in high school should also get a budget for exploratory activities, because they don’t know what choices are possible until they experience various options, he said.

The state now determines funding levels annually on paper but reserves the right to change the amount actually released for spending every three months – on a quarterly basis. Families and providers agree that the quarterly allocation - the only one like it in the nation – is a major impediment to the systematic planning necessary for a stable system of supports.

Kane provided some history on the quarterly allocations:

In 2010, he said, payments to private service providers ran over budget and the state told them their reimbursements would be cut for two months – one month retroactively – to make up the difference.

Some providers sued, Kane said, arguing that the state was still obliged to fulfill its contract with them. The providers won, but the next year, in 2011, BHDDH introduced quarterly allocations along with Project Sustainability, the fee-for-service system that significantly reduced reimbursements and is at the center of the commission’s deliberations.

Mental Health Services Lag

The issue of mental health received considerable attention, with Nerney recommending that the system develop and implement a variety of strategies to prevent crises or resolve them once they occur.

Nerney supported the idea of a mobile crisis unit that he said was suggested by Gloria Quinn, Executive Director of West Bay Residential Services, at the previous commission meeting May 6.

Quinn recommended convening a group to explore successful practices in supporting those with complex mental health and behavioral needs in the community, minimizing the need for excessive psychiatric hospitalization.

Rebecca Boss, the BHDDH executive director, and Kerri Zanchi, the Director of the Division of Developmental Disabilities, both indicated they are aware of a need for greater support and intervention in the area of behavioral health for persons with developmental disabilities.

“We don’t have a good handle on the needs of families in crisis,” Zanchi said.

The assessment tool that BHDDH uses to determine funding levels, the Supports Intensity Scale (SIS), garnered a new round of criticism, despite efforts in 2016 to reframe the questions it asks to better identify support needs and the re-training of all the social workers who conduct the highly scripted interviews..

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

Critic Says Assessment Method Is “Demeaning”

Peter Quattromani, executive director of United Cerebral Palsy RI and spokesman for the Providers Council, said the state should return to using the Personal Capacity Inventory to identify funding needs because it reflects a more collaborative approach than the SIS.

Quattromani said he sat in on several SIS interviews and found the SIS to be a “very demeaning experience” with “very intrusive questions.” In some cases the interview varied, depending on who was asking the questions, he said.

Antosh said when parents experience the SIS for the first time, “they are absolutely horrified by it.”

He suggested that when the SIS was first piloted, it was not intrusive. It was “a conversation”, albeit a lengthy one, lasting for or five hours, Antosh said. Afterward the responses were correlated with funding needs.

Antosh said the SIS was designed to help professionals develop support plans, not as a funding tool, even though Rhode Island and other states use it that way.

Antosh said he would recommend that Rhode Island design its own assessment tool, not necessarily eliminating the SIS but using multiple factors to determine funding, including an exploration of behavioral health issues and other areas not covered in the SIS.

Heather Mincey, assistant director of the Division of Developmental Disabilities, said not all the comments abut the SIS process she has received from families have been negative, with some parents saying it “wasn’t all that bad.”

The May 22 meeting concluded individual members’ presentations on recommendations for change, which will be reviewed and consolidated along common themes and incorporated into a plan for moving forward, said the Commission chairman, Sen. Louis DiPalma, D-Middletown.

He said he anticipated a five-year process for implementation, with the aim of making Rhode Island achieve top national ranking among state systems of developmental disability services.

In the meantime, DiPalma said that he next commission meeting, on June 18, will feature remarks by the state Director of Labor and Training, Scott R. Jensen; and the CEO of the Rhode Island Public Transit Authority, Scott Avedesian Employment and transportation are two topics that have sparked a lot of complaints, DiPalma said. He said he expects the commission to continue meeting into July.

RI Consent Decree Judge Wants To Sharpen Focus On DD Services That Encourage Integration

By Gina Macris

For nearly three years, the U.S. District Court in Rhode Island has monitored the state’s progress in implementing a federal civil rights consent decree that seeks to integrate adults facing intellectual or developmental challenges with their communities, detailing the progress made and work yet to be done.

With the 2014 consent decree nearing the middle of its 10-year run, and an earlier, more limited companion agreement designed to expire in July, 2020, Judge John J. McConnell, Jr. has asked participants to come to court next time with a different approach.

In a hearing Oct.30, McConnell asked an independent court monitor, lawyers for the U.S. Department of Justice and state officials to come to court next time with a focus on the areas of greatest concern and to be prepared with recommendations for what the Court can do other than monitor developments.

On Oct. 30, he boiled down the core issues into two parts.

• Each person protected by the consent decree should have a thoughtful long-range plan for a career that reflects his or her unique needs, preferences and goals.

• Actual services funded by the state should fit with the goals of the individualized career development plan.

To be sure, McConnell praised the “tremendous progress” made by the state, including the closure earlier this year of the last sheltered workshop. He also heard about increases in supported employment, the growth of a quality improvement unit aimed at assuring all services meet high standards, and cooperation among state officials and private providers. Providers have said in recent months that their working relationship with state officials is better than it has been in many years.

At the same time, problems persist in finding jobs for young adults and in providing high quality personalized support services for non-work activities that typically take up the majority of individuals’ time, according to the testimony McConnell heard.

Continuing concerns about inadequate funding surfaced during the Oct. 30 hearing when the independent monitor, Charles Moseley, described a visit he and another consultant had with state officials and 16 providers in early August.

In a report filed with the Court hours before the hearing, Moseley said “significant numbers” of the providers indicated that they continue to run deficits in key areas and that funding allocations for individual services are insufficient to cover the costs of the services that must be provided.

Among major barriers to providing services, 94 percent cited transportation, 88 percent pointed to a lack of funding and complicated billing procedures for reimbursement, and 69 percent highlighted high staff turnover and poor job retention.

All these factors become particularly problematic when the state and the federal government are asking providers to undertake more staff training to gain expertise in the principles and practice of individualization, to enroll more young adults as clients, and to provide individualized support in the community as each of their charges goes to different job sites and engages in non-work activities in various places.

According to the consent decree, all young adults who left high school between 2013 and 2016 – those seeking adult services for the first time - were to be offered employment by July 1, 2016. But the state still hasn’t fulfilled that requirement, even after the deadline was extended to Sept. 30 of this year.

Moseley reported that on Sept. 29, the state had achieved 77 percent of that goal, or 257 job placements out of an “employment census” of 334 young adults.

Victoria Thomas, the DOJ lawyer, said she believes the state is using effective strategies to reach out to the remaining young adults and will monitor the situation.

She said DOJ lawyers visited the Birch Academy at Mount Pleasant High School recently and while they were generally delighted with the transformation, they were surprised to learn “how few high school students exited directly into supported employment.”

Students at the Birch Academy are protected by the predecessor to the 2014 statewide consent decree, called the Interim Settlement Agreement. The agreement, signed in 2013, was limited to addressing the use of the Birch high school program as a feeder to a now-defunct sheltered workshop in North Providence called Training Through Placement.

Thomas said that, according to the Interim Settlement Agreement, students who turn 18 should have the support they need to make the transition to work or actually hold a job while they are still in school.

Thomas said she wants to address the transition issue in the time remaining for the Interim Settlement Agreement, which is to end July 1, 2020.

All parties to the settlement must be in “substantial compliance” with the Interim Settlement Agreement a year before it expires. What substantial compliance looks like might be different for the state than for the Providence School Department, said Thomas, telling the judge that the DOJ will prepare some recommendations on the matter.

The city has met virtually every target set out by the Interim Settlement Agreement and earned McConnell’s praise. “Keep it up,” he said.

The state is responsible to the court for the work done by the private service providers under the terms of both the Interim Settlement Agreement and the statewide consent decree.

The providers’ performance got mixed reviews from Moseley and another consultant, William Ashe, who in early October analyzed a small random sample of plans, looking for the degree to which they were individualized and how they compared to the actual services provided.

The consultants expected the providers to use a guide on “person-centered thinking” developed by the Sherlock Center on Disabilities at Rhode Island College to formulate plans that put a particular person’s needs, preferences, and goals at the center of the planning process.

In 10 of the 17 plans, participants chose non-work activities from a menu of offerings that rotated on a weekly schedule, according to Ashe. But this kind of choice is not considered “person-centered” because the participants were not able to consider the the full range of opportunities available in the community.

“It is fair to say that the implementation of person-centered planning remains a work in progress where there has been significant but uneven advances in the development of person-centered planning practices. There remains a significant amount of work yet to be done,” Ashe wrote.

He found other instances in which plans indicated individuals had significant problems in communication. But neither the plans nor the actual services addressed ways in which communication could be improved.

“Frequently, there were clear instances of personal preference identified in the planning process that did not appear to be reflected in the services that were actually happening, Ashe said.

For example, one man indicated he wanted to learn to read and use a computer, but none of the goals written in his plan responded to that request.

Some of the plans reviewed were for clients of Easter Seals Rhode Island, formerly Community Work Services, an agency that nearly lost its license to operate in 2017 but has made a dramatic turnaround during the last year.

Ashe said “there are still very substantial steps that need to be taken in order to get this organization to an acceptable level of “person-centeredness” and to some extent, the same applies to other agencies.

Agencies should “diversify” the way that integrated day services are provided, he said.

From what Ashe observed, he said, it felt like community agencies like the YMCA and a bowling alley were becoming “a little bit like a day program” as staff and clients from one or more service providers gathered in the same place at the same time.

At the bowling alley, staff from several agencies sat together with their clipboards and watched the bowlers, Ashe said.

Based on a review of documents and direct observations, Ashe said, “there is a significant ongoing need for continued training on person-centered planning with an emphasis on how to take a plan and put it into action.”

“A good person-centered plan by itself does not produce good person-centered outcomes. How to individualize and implement these plans needs to be a focus for training,” Ashe concluded.

Read the full monitor’s report here.

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.

DiPalma: RI Must Invest In Transformation of DD Services To Protect Most Vulnerable

By Louis P. DiPalma

The Rhode Island Division of Developmental Disabilities (DDD) in the Department of Behavioral Health, Developmental Disabilities, and Hospitals (BHDDH) is undergoing a significant transformation, much like Department of Children, Youth and Families. This transformation requires financial investment to succeed, not the proposed cuts.

As legislators, we must work to ensure we invest in the most vulnerable populations in our state, including the more than 4,000 individuals living with intellectual/ developmental disabilities (I/DD) who are served by BHDDH-DDD.

From a programs perspective, there are at least two critical elements of transformation the agency is undertaking. The first element is required by the 10-year 2014 consent decree settlement with the Department of Justice for violation of the civil rights of individuals with I/DD. The state, currently in its fourth year of transformation, is now under a court order.

The key focus of this transformational initiative is to transition individuals with I/DD from working in sheltered workshops to integrated employment and community-based programming. And, while the state is making progress in many areas, there is still a need for increased focus and attention.

When all is said and done, in 2024, successfully achieving the goals of the Consent Decree will require approximately $25 million in annual state and federal funding. The Department of Justice is closely monitoring our investments and commitment to reforming our practices toward full inclusion of individuals with disabilities in local communities and businesses. We must invest and commit to the ideals of inclusion for individuals with I/DD.

Another critical element of transformation is the transition of individuals with I/DD from living in group homes to alternative living arrangements, such as shared living arrangements. This transformational, voluntary program, when fully implemented, will require less funding than what is currently needed to support the same individuals in group homes.

The state is making progress in ensuring new DD clients who enter the system have the opportunity to live independently with supports, though challenges remain. During this multi-year transition, the agency will be required to sustain and maintain both systems, necessitating additional investment for multiple years, including in additional personnel. Without it, the transition will not be successful, individuals will not be in the most appropriate settings, and the savings would be unrealized.

Gov. Gina Raimondo has committed to new leadership for BHDDH and DDD to lead this transformation, and progress is being made. However, we are at a point in the transformation that requires investment in the division and the services they fund.

A review of the proposed budgets for the BHDDH-DDD, shows a revised current year budget, including general revenue and federal funding, of $269 million and the proposed fiscal year 2019 budget of $248 million, a reduction of $21 million.

A $21 million reduction in funding at a time when investments are needed. As a legislator, I appreciate the challenge the governor is confronting, especially in light of our structural deficit. Any increases in revenues should be invested in Rhode Island’s most vulnerable citizens, including individuals living with I/DD. It is the right thing to do, and it will help continue progress toward system transformation and compliance with the consent decree.

President Franklin D. Roosevelt said it best: “The test of our progress is not whether we add more to the abundance of those who have much; it is whether we provide enough for those who have little.”

Louis P. DiPalma, a Rhode Island state senator, is a Democrat serving Newport, Middletown, Little Compton, and Tiverton

RI Olmstead Judge Says He'll Be Keeping Eye On State And Federal Funding For Disability Services

By Gina Macris

John J. McConnell, Jr., the U.S. District Court judge overseeing changes in Rhode Island’s developmental disability service system, has signaled that that future funding of the social services is very much on his mind.

During a hearing Nov. 30 in Providence, McConnell listened to the state’s summary of the latest progress and the work still to be done to achieve the goals necessary to transform Rhode Island’s segregated services for persons with developmental disabilities into an integrated, community-based model. The transformation would bring Rhode Island into compliance with the U.S. Supreme Court Olmstead decision clarifying the integration mandate of the Americans With Disabilities Act.

After Kerri Zanchi, the state Director of Developmental Disabilities, had finished her prepared remarks, McConnell interjected the observation that the necessary services are all “contingent on funding.”

“Funding is a key issue,” both at the state and federal level, he said. 

 Zanchi, too, expressed concerns, saying the developmental disability community needs advocacy to make its case on budget issues.

Most recently in Washington, disability rights advocates have said that the proposed tax cuts now before Congress would result in reductions in spending through Medicaid, the federal-state program that pays for services required by a 2013 interim agreement and a broader 2014 consent decree between the state of Rhode Island and the U.S. Department of Justice.

In addition, the federal government’s re-direction of some vocational rehabilitation funding from Rhode Island to Texas has triggered a waiting list, effective Dec. 1, for future clients of Rhode Island’s Office of Rehabilitation Services (ORS), which is involved in implementing both the 2013 and 2014 agreements.

No one currently served by ORS will be affected, but by the time the court is scheduled to reconvene in April, the waiting list could include applicants for services who are covered by the consent decree or the interim agreement.

Meanwhile, Rhode Island’s implementation of the agreements has contributed to a projected cost overrun of almost $26 million in federal and state Medicaid funds for developmental disability services in the current fiscal year, and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) is under pressure to find ways to cut costs.

McConnell said he hoped that state officials will take into consideration the requirements of the 2014 consent decree (and the more limited interim agreement) as they look for cuts in social services in the coming months.

He said he wanted it known that “the third equal branch of government is watching.”

State Details Compliance Efforts  

The Nov. 30 hearing concerned those who are covered by the so-called “Interim Settlement Agreement,” originally 125 former students at the Birch Academy at Mount Pleasant High School in Providence who at one time were funneled into jobs paying sub-minimum wage at the former sheltered workshop, Training Through Placement (TTP) in North Providence. 

The latest update puts the current number in this group at 91 individuals whose cases are still open at the state Division of Developmental Disabilities (DDD), said Zanchi, the division director.

She summarized the state’s progress in working with them:

• 51 have jobs in the community paying at least minimum wage
• 21 are unemployed but job-hunting, with support 
• 7 are currently inactive
• 12 have chosen not to work but are receiving integrated day services from a total of 12 providers.

In a report to the court submitted the eve of the hearing, an independent monitor, Charles Moseley, framed the employment statistics differently.

He zeroed in on an order from McConnell in June that the state follow up on 46 unemployed members of the class protected by the interim agreement of 2013, including 34 who had never had a job in the community.

Among the group of 46, Moseley said the state had made 11 job placements as of the end of October. That is most of the goal of 15 placements that must be made by March 23, 2018. An additional 16 placements must be made by June 23, 2018, and target dates for the remaining 15 placements are to be determined, he said. (Some of them have indicated they don't want to work.)

'Underperformance' Of One Provider Hurt State

Much of the testimony, as well as Moseley’s comprehensive report, concerned Community Work Services, the successor to TTP, the sheltered workshop at the center of the U.S. Department of Justice investigation that led to the interim agreement of 2013.

CWS serves 57 of the 91 individuals covered by the interim agreement, according to Zanchi. (CWS’ own report to the monitor earlier in November put that figure at 59, with 5 of the 59 transitioning to other providers.)    

Of the CWS clients covered by the interim agreement, 25 belong to the group of 46 unemployed individuals the judge said needed special attention, according to Moseley’s report. The rest are served by other providers.

Zanchi said the “underperformance” of CWS “has directly contributed” to the state’s non-compliance with the interim agreement’s targets for employment and integrated non-work services. CWS is a subsidiary of Fedcap Rehabilitation Services of New York.

By now, the state was to have found jobs for all members of the former Birch and TTP group who made an informed choice to seek employment. 

Zanchi said the current CWS leadership has shown a “solid grasp of the significant change needed in their organizational structure” as well as the fact that it needs to reach performance goals “expeditiously.”

She emphasized that CWS’ “re-engagement of families” to support integrated services “cannot be understated.”

She shared the story of one young CWS client and the client's parents, who in a two-year span, had gradually shifted from adamant opposition toward warm embrace of the idea of employment. The client ow volunteers at the Rhode Island Community Food Bank and a local food pantry and meets with a job developer each week to explore part-time job opportunities, Zanchi said.  

CWS Nearly Lost License

In May, CWS had come under fire – and was close to losing its license to operate in Rhode Island – for substandard programming, according to Moseley.

Since then, there has been a nearly complete turnover of staff and management at CWS, which has drawn up a new blueprint for change in keeping with principles of “person-centered planning,” putting the individual’s needs and preferences at the center of customized plans for immediate services and long-term goals. 

CWS also has begun a pilot program called “Employment Without Walls” with 7 clients who are hunting for jobs. 

The CWS plan was included in a 59-page report to the court from Moseley. Also included in Moseley's report was an evaluation from William Ashe, a Vermont-based consultant, who worked with Moseley in conducting a three-day, on-site review of CWS in early October.

Ashe, who had first evaluated CWS in October, 2015, said that “CWS is very different from the organization that was visited some two years ago.”

At the same time, Ashe said that “It was my hope that more gains would have been made over these 24 months than has been the case, particularly in the degree of sophistication of the person-centered planning process.” He noted that CWS, led by program director Lori Norris, “appears committed to restructuring the services and supports that it provides to comply with the ISA (Interim Settlement Agreement of 2013) and state regulations.“

In an interview, Ashe said, Norris also touched on financial challenges, which plague all service providers in Rhode Island as they struggle to help BHDDH meet the requirements of the federal mandates and still remain solvent.

According to Ashe’s report, Norris said “her superiors at FedCap are committed to success and will assure the proper level of staffing support even if this resource level is greater than what the current billing authorizations will support.”

CWS’ probationary license ends Dec. 31 and BHDDH must decide whether the agency will continue operating in Rhode Island.

The Massachusetts operations of CWS, a Boston-based agency, are now headed by Craig Stenning, Rhode Island’s former BHDDH director, who is also listed as Fedcap’s Senior Vice President for the New England region on the Fedcap website.  

In his report, Ashe said Norris “was candid in her comments” during the October interview, “stating that the CWS program status at the time of her appointment (six months earlier) was very inadequate across most areas of performance.

“She described her efforts over this past six-month period to change the culture of CWS,” a drive that included a large turnover of staff.

CWS Tries Turnaround

After visiting KFI, a model program for integrated services in Maine, Norris told Ashe, she took several steps at CWS.

Norris, according to Ashe’s report, has:

• Stopped renovations at the former TTP building, instead planning to abandon any reliance on a facility for integrated services as of Jan. 1. (The former TTP building had been ordered closed to clients by the state in March, 2017 because of unsafe conditions. CWS’ license was suspended for a few days until it found a substitute location in quarters owned by the Fogarty Center.)  
• Discontinued the use of vans to transport clients, instead opting to arrange for staff members to use their own cars on the job.
• Changed the job title of direct support staff to community advocate, saying she believes “this title better reflects the culture change she wishes to establish and more accurately conforms to the expectation for how she wants staff to approach their work.”
• Adopted a flexible work schedule for staff, so that they are available evenings and weekends to support clients who work outside normal business hours.

Problems Extend Beyond CWS

Moseley, the monitor, noted in his report that the non-work services received by CWS clients do not meet the requirements of the interim agreement or the statewide consent decree for integrated activities. 

These activities are intended to “provide individuals with disabilities with opportunities to fully engage with people without disabilities in the mainstream” of social life as well as work, he said.

Practical and effective strategies for achieving these goals are not clear, not only at CWS but across the developmental disability service system, Moseley said.

To address the problem, the state Division of Developmental Disabilities (DDD) has articulated guiding principles and standards for integrated day services. Through the Sherlock Center at Rhode Island College, DDD also offers training in implementing successful strategies for integration, Moseley said, but he recommended the training be expanded.

Another, related problem is a mismatch between existing services for individuals and their long-range plans.

In a court-ordered review of individual records documenting current services and future plans, DDD found that in 58 percent of the cases, individuals’ ongoing activities didn’t necessarily help them achieve their goals, Zanchi told the judge.

As a result, DDD has taken steps to merge short-range and long-range planning into one streamlined and holistic process that encourages providers to think in terms of individualized services that can help develop skills and interests that will help a particular person realize long-term aspirations.  

In addition, Zanchi said, DDD has developed a separate written guide, or rubric, for reviewing the quality of these individualized plans.

Zanchi Praises 'Collective Vision'

Zanchi concluded that she is “confident that there continues to be many areas where progress is clear,” recognizing that “quality is still developing” in services available to adults with developmental disabilities.

Zanchi said the progress is the direct result of a “collective vision that is guiding the work and transforming services.”

“We are building a remarkable partnership with the true experts of the DD system,” she said, referring to consumers, families, providers, business partners, community advocates as well as DD and ORS staffers.

They are all “invested in this progress and are at our table to strengthen our system to achieve these outcomes,” Zanchi said.

Click here to read the monitor's report.

Monitor Seeks Changes in BHDDH Funding Methods To Satisfy RI Consent Decree

By Gina Macris

Rhode Island’s method of allocating funding to adults with developmental disabilities does not meet the requirements of a 2014 consent decree in that it does not take into sufficient account the needs and goals of the individuals involved, according to a new report from an independent court monitor.

The monitor, Charles Moseley, wants the state to review and modify its methods of assigning funding to make sure that “service dollars are targeted to meet the individual’s personal goals and preferences.”

That’s not all. In a report submitted to the U.S. District Court Feb. 10, Moseley incorporated recommendations from outside experts that would bring sweeping changes to the organization of the state Division of Developmental Disabilities (DDD).  (A court hearing scheduled for Feb. 14 has been postponed.) 

The report focuses on the degree to which community-based non-work services are individualized, concluding that Rhode Island has a way to go to achieve compliance.

It also incorporates recommendations from a quality improvement expert who suggested a merger of fragmented licensing, investigative, and program improvement functions at DDD, clearer regulatory standards, and a more precise definition of the future role of the social worker in light of burdensome caseloads (last reported by the state at 205 clients per worker.)

The consultant, Gail Grossman, a former Massachusetts state official, envisioned a unified and continual quality improvement initiative encompassing both DDD and the Office of Rehabilitation Services at the state Department of Human Services.  Both agencies oversee employment-related  services for adults with disabilities.

Grossman said there should be enough staff to review the performance of 38 service providers every two years. ORS now has only enough staff to make the circuit every nine years,  which Grossman found “totally insufficient.” 

The court monitor asked the state for quarterly progress reports, beginning April 1, on its progress in meeting a number of goals. They include specific quality improvement recommendations made by Grossman as well as modifications in funding methods and other changes necessary to personalize the planning and delivery of services according to the needs and preferences of individuals entitled to them.

Recommendations concerning the funding of individualized services resulted from a review undertaken in November by Moseley, A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, and a Vermont-based independent consultant, William Ashe. They examined the non-work community-based services provided to a sample of 21 adults with developmental disabilities who had widely varying profiles.

From Ashe’s report on the study of 21 individuals and from other data, Moseley concluded that so-called “person-centered” planning and community-based services do not meet the requirements of the consent decree.

The consent decree defines “person-centered planning” as a “formal process that organizes services and supports around a self-directed, self-determined and goal-directed future.”  It gives additional detail on how such a plan is to be written.

Ashe and Moseley emphasized that the person-centered plan should drive services, not a funding formula based on a person’s ability to function independently, as is currently the case.

“The funding that agencies receive is based on assessed ‘functioning level’ and not based upon what people may want or really need,” Ashe wrote.

Moseley put it this way: there should be a connection between a “person-centered planning process” and funding methods so that “service dollars are targeted to meet the individuals personal goals and preferences.”

Moseley also wants the state to strengthen its oversight and the capacity of private providers to deliver “truly person-centered plans and services based on clear standards and expectations.” 

Ashe said the annual plans written for the 21 individuals in the study were too similar. The state’s planning process “feels rigid and automatic,” and an individual’s current plan “may often look remarkably similar to the one that was done last year.”

“Agencies are often in a situation where their staffing levels prohibit them from individualizing supports to the extent that is necessary to really implement services that are based upon real choice, ” Ashe wrote.  

What appears to be lost in the allocation process is an idea of the outcomes that are important for the persons involved, Ashe said.

Ashe said the consent decree recognizes that the state uses the Supports Intensity Scale, a standardized assessment tool, to determine an individual’s need for support.

The current funding method connects the results of the assessment to one of five allocation levels, based on an algorithm developed by a healthcare management consultant for the state. Planning for services occurs only after funding limits have been established.

In some of the case records reviewed by Ashe, Moseley, and Antosh, it was “exceedingly difficult to see how the service to be delivered could ever be realized to the standard expected by the consent decree,” the report said.

For most of the individuals whose services were reviewed, the choice of activities was limited..

Ashe placed a high priority on training for everyone involved in developmental disability services -  private providers as well as state workers, services recipients, their families, and advocates - on the meaning of purposeful activities in integrated, community settings and how to provide them.

Click here to read the monitor's report.