RI DD Study Commission To Meet March 28 To Begin Airing Recommendations For Change

By Gina Macris

The special legislative commission studying Project Sustainability, Rhode Island’s fee-for-service funding model for adult developmental disability services, will resume deliberations March 28, according to its chairman, Sen. Louis DiPalma, D-Middletown.

The commission last met in January, hearing testimony on best practices from one national expert and another from Vermont, where the system appears to be closely aligned with the needs and preferences of individuals.

DiPalma said he has spent the intervening weeks meeting one-on-one with commission members who represent the state and various segments of the developmental disability community to jump-start their analysis of expert testimony the commission has received since last fall. By the time of the March 28 meeting, DiPalma said, he expects commission members to be ready to make well-developed recommendations that identify concrete goals and the strategies for achieving them.

DiPalma said the vision of the commission is to have a more individualized, or “person-centered” system within the next five years.

He said he expects it will take two meetings to fully air the members’ recommendations on how to get there.

A review of Project Sustainability’s rates and the fee-for-service model itself would have been the commission’s first recommendation, if the state had not already launched that project, DiPalma said.

“The reimbursement model is the foundation and is pivotal to everything that is done,” he said. Project Sustainability, enacted by the General Assembly in 2011, did not reduce services or create waiting lists but was implemented on the backs of private providers and their employees, DiPalma said.

Project Sustainability also has been criticized by the U.S. Department of Justice, which found that it incentivized segregated services for adults with developmental disabilities, in violation of the integration mandate of the Americans with Disabilities Act. That finding and others resulted in a 2014 consent decree, which authorizes broad federal oversight of the state’s efforts to transform its system to a network of community-based, individualized services that put the consumer first.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) recently hired the non-profit New England States Consortium Systems Organization as a consultant in reviewing the fee-for-service model and its rates.

DiPalma has said it is imperative that the review be completed in time for Governor Gina Raimondo to submit her budget proposal to the General Assembly in January, 2020. He said he believes the commission can have an oversight role on the implementation of any changes in the rate model that BHDDH recommends.

DiPalma said the commission meeting on Thursday, March 28, will run from 2-4 p.m. in the Senate Lounge at the State House.

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.

RI Consent Decree Task Force Details Concerns About DD Services In Report To Federal Monitor

By Gina Macris

Many young adults with developmental disabilities in Rhode Island are still not receiving services to which they are entitled in a timely manner. Some are not getting services at all.

These conclusions have emerged as the consensus of the Employment First Task Force (EFTF) concerning Rhode Islanders with intellectual and developmental challenges who are trying to get regular jobs and other integrated services promised by a federal consent decree signed nearly four years ago.

The EFTF grew out of a provision of the 2014 federal consent decree which called for a bridge between the public and state government.  An independent court monitor on the case has made it clear that he expects the EFTF to provide a reality check from the community as the state tries to desegregate its services for adults with developmental disabilities to comply with the Americans With Disabilities Act.

The Task Force, including developmental disability professionals in the private sector, family members and consumers themselves, summarized its observations and recommendations covering the last half of 2017 in a recent progress report to the court monitor, Charles Moseley.

In 2016, under pressure from Moseley, the U.S. Department of Justice, and U.S. District Court Judge John J. McConnell, Jr., the state cleared a backlog of as many as 250 applications for adult services and developed an “eligibility by 17” policy.

The policy is intended to allow families plenty of time to plan a smooth transition for their sons and daughters to move from high school to the adult world. Most special education students eligible for adult services from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) stay in school until the age of 21.

Nearly a year after the “eligibility by 17” policy was announced, in July, 2017, EFTF members were still hearing comments relayed by special education professionals that some families of students were notified of their eligibility but weren’t told how much money they would be allocated in time to plan individualized and meaningful services.

In response to follow-up questions from Developmental Disability News, a BHDDH spokeswoman said in an email August 3 that the agency, working with the Rhode Island Department of Education, local school districts and the Rhode Island Parent Information Network,  is “able to adhere to (the state’s) ‘eligibility by 17 policy.’ ”

"Logjam Cited In Onset Of Adult Services

 But five days later, Claire Rosenbaum, an EFTF member who works as the adult services coordinator at the Sherlock Center on Disabilities at Rhode Island College, said at a public forum that “there seems to be a logjam” when families are trying to figure out how much money the state has awarded them and what it will buy.

At the time, Kerri Zanchi, director of the Division of Developmental Disabilities, (DDD) said her division aimed to give families a one year to plan before their son or daughter leaves left high school and needs needed adult services.

But Rosenbaum said a year is not long enough. Families may explore their options and settle on a particular agency, only to be told it cannot accept a new client with a particular disability or disabilities, she said.

That scenario is not uncommon. A precarious fiscal landscape has prompted many providers of developmental disability services to limit the number of new clients. 

Often, families turned down by one or more agencies  decide that the only way they can get a customized, high quality program is to organize it themselves and pay individual workers through a designated fiscal agent that handles the budget. Once that decision has been made, the families must begin planning all over again, Rosenbaum said, reiterating her conclusion that a year is not enough.

In December, DDD provided data about "eligibility by 17" that EFTF had requested six months earlier, including:

  •  The number of applications and the ages of applicants
  •  The number found eligible and the time span between application and eligibility determination
  •  The number of newly eligible persons who received an initial needs assessment and the time span between the eligibility determination and the assessment interview
  • The number who began receiving adult services and the time span from the completion of the needs assessment

In its report, EFTF said that DDD is “actively charting when and why gaps in the process appear.” 

The “gaps in the process” are not defined in the report. But it said Task Force members and state officials agreed to meet regularly to “determine what issues, if any, exist in this process and how to address these issues.”

Data released by BHDDH in quarterly public forums in November and February shed light on some of the requests that had been made by EFTF; the number of applications, the ages of the applicants, and a breakdown on the proportion found eligible. 

The “eligibility by 17” policy assumes that 16 and 17-year olds are submitting applications to BHDDH for adult services, but the most recent data indicates that the 16 and 17year-old age group accounted for only 11 percent of applications between August, 2016 and February 10, 2018. The lack of applications from younger students suggests that the “eligibility by 17” policy hasn’t been thoroughly communicated to families. (See chart below.) 

graph on age distribution of applicants.JPG

At the same time, one table indicates that the proportion of applications from 16 and 17 year-olds has been increasing in the last year.

students applying earlier.jpg

At the most recent public forum, BHDDH officials also presented information on the proportion of applicants that have been found eligible for services. Of 635 applications received between August, 2016 and Feb. 16, 2018, a total of 595 have been decided, including 264, or 44 percent, that were approved without any additional documentation.

The data indicated that an additional 158, or 27 percent, eventually would be approved once documentation was completed.  

Other Issues Raised By Task Force

The Task Force also expressed concerns about other issues. They include:

  • A lengthy needs assessment done for each person eligible for services
  • The ramifications of a push for more individualized, or “person-centered” services and the planning that goes into them
  • An overall approach, dubbed “conflict-free,” in which planning, funding, and service delivery are handled by separate entities so that the best interests of individuals with developmental disabilities are not compromised. Currently, BHDDH handles funding and assessment and approves individual service plans developed by private agencies or independent developmental disability professionals.

Assessing Individual Needs  

 In November, 2016, the state implemented a revised needs assessment, called the SIS-A  (Supports Intensity Scale - A). The SIS-A had been promoted as more accurate than the previous version, and the Task Force concurred.

“Reports seem to indicate better results,” the report said.

At the same time, the Task Force found “ongoing challenges.”

For example, the Task Force said the SIS-A, developed by the American Association on Intellectual and Developmental Disabilities, was “not intended to be a funding mechanism.” That’s the purpose for which it is used in Rhode Island and many other states.

The Task Force recommended that an independent third party be chosen to provide “better interviews” and eliminate conflicts with funding decisions.

Highly detailed interviews with persons eligible for developmental disability services and their families are at the heart of the SIS-A assessment process. Both the assessment and the individual funding decisions are in the hands of BHDDH.

During the interviews, families are very reluctant to speak in great detail about the “deficits and struggles” of the individual at the center of the assessment process, but they don’t understand that this hesitance may result in lower funding for their loved one, the Task Force said.

“Families don’t understand that the first ten minutes of questions which capture exceptional medical and behavioral issues dictate a substantial difference in funding,” the report said.

The Task Force recommended that community organizations, like Advocates In Action, the Cross Disability Coalition, The Rhode Island Public Information Network, and a new parent advocacy group called  RI-FORCE, offer training to their constituencies on the interview process of the SIS-A.

A Call for True Conflict–Free Planning

The report tackled the challenges of so-called person-centered planning, in which the needs and preferences of an individual drive short-range and long-range career and life goals, regardless of the immediate limitations of program offerings of a particular agency.

 In person-centered planning, these individual needs and preferences also drive budgetary decisions, although it is generally understood that not all the supports needed by a person with developmental disabilities will be provided by paid staff.  

“It is our opinion that implementing real, conflict free person-centered planning could have a greater positive effect on people’s lives than the consent decree itself,” the Task Force wrote.

“While there has been some recent movement on the issue,” according to the report,  Rhode Island has been out of compliance for four years with Medicaid regulations for conflict-free individualized planning and management of services.

The Task Force said individuals with developmental disabilities, their families, and service providers all have shown resistance to the person-centered planning initiative now underway.

Some consumers and their families “view this as an additional layer of bureaucracy, while others would prefer all their dollars go to services rather than planning. Some family members are concerned that they would not be as involved using this process,” the report said.

Service providers, who are paid for planning individualized client programs, fear that they will not be able to meet the individualized needs of clients, particularly with limited funds, high staff turnover, and limited transportation options, according to the report.

There is a concern that “conflict-free” removes the staff who best know the individual from the planning process, the Task Force said.

It also expressed concern that there are no additional funds to provide conflict-free planning, saying that redistributing existing planning funds that now go to private providers “may destabilize already underfunded services.”

While calling for additional funding for person-centered planning, the Task Force also urged a continuation of a series of workshops on “person-centered” thinking and planning that is offered by the Sherlock Center on Disabilities at Rhode Island College to promote better communication on the topic. 

Some of the perceptions about person-centered planning “are based on misunderstandings and the general fear that comes with any change,” according to the report. “Communication on this issue will be extremely important.”

BHDDH is trying to address the issue of funding, both to achieve conflict-free planning and case management and to balance its budget in the next fiscal year.

Governor Gina Raimondo’s budget proposal seeks the General Assembly’s approval to amend the Medicaid State Plan so BHDDH can apply for a Health Home waiver that would provide a 90 percent reimbursement rate for person-centered planning and other specific services for two years. 

The earliest such a Health Home might begin operation, on a pilot basis, would be in January, 2019,  and that might be optimistic, according to Rebecca Boss, the BHDDH director.

Supported Employment At Issue

The Task Force, meanwhile, expressed concern about the overall effectiveness of a pilot program in supported employment that is intended to focus on the individual.

“Task Force members expressed concerns regarding the ‘person-centeredness’ of the program, the training requirements to participate, communications regarding the program, and overall effectiveness,” the report said.

Existing staff-to-client ratios prohibit individualizing job seekers’ daily and weekly schedules, according to the Task Force, although that comment did not refer specifically to the pilot program.  DDD also offers job-related services outside the demonstration program.

The Task Force recommended some of its members meet with state officials regularly to review data and develop strategies to ensure the success of the Person-Centered Supported Employment Performance Program.

RI Has Missed Two Court-Ordered Deadlines For Holding Troubled Fedcap Agency Accountable

By Gina Macris

Continuing difficulties at the former sheltered workshop that stood for everything wrong with Rhode Island’s developmental disability system have caused new noncompliance problems for the state in U.S. District Court. 

The problems revolve around one private agency, Community Work Services (CWS), a program of the New York-based Fedcap Rehabilitation Services. But the state is accountable to the court for the way it manages its service vendors and for ensuring that adults with developmental disabilities receive high quality supports under provisions of 2013 and 2014 agreements with the U.S. Department of Justice (DOJ).

 In both settlements, Rhode Island agreed to end segregation of adults with developmental disabilities – a violation of the Americans With Disabilities Act (ADA) – and instead to offer them the choice of supported employment and integrated non-work activities.

Community Work Services (CWS) was hired in 2013 to correct ADA violations at the former sheltered workshop, Training Through Placement (TTP.)  But CWS itself has operated under one form or another of state supervision for 17 months and nearly lost its license earlier this year.

Missed Deadlines

According to the latest report of a federal court monitor, the state has missed two deadlines; one, a July 30 date for improving the quality of individual career plans and another, June 30, for verifying the accuracy of data reported by CWS on its clients’ progress. 

Despite the state’s efforts to resolve inconsistencies in data, “problems continue to exist with the information provided by CWS,” according to a Sept. 7 report  by the monitor, Charles Moseley, to U.S. District Court Judge John J. McConnell.  

The state, the monitor, and the DOJ use that data to determine whether CWS is following the requirements of the ADA agreements. 

Blueprints For The Future

And so-called “career development plans” are not supposed to be just paperwork, but blueprints that allow officials to see in an instant how the services a client currently receives fit into individualized short-term and long-term goals. 

The plans are intended to reflect a key principle embodied in the ADA; that people with disabilities have choices in how they live their lives.  

The monitor also said 70 percent of the clients’ career plans were “unacceptable” and had not been improved in the month after the judge’s July 30 deadline, despite the state’s efforts.

For most of the 64 Individuals who are active CWS clients, the daily activities and yearly individual service plans didn’t line up with the long-range career development plans, according to Moseley.  

In other cases, the long-range plans were “well done”, but the plans were “not being implemented in a manner which aligns with the participants’ interests,” Moseley said.

Neither the DOJ nor the judge have responded on the record to Moseley’s latest findings, although McConnell has said in the most recent hearing on the so-called “interim settlement agreement” of 2013 that he considers himself personally responsible for defending the rights of about 125 individuals protected by the agreement.

Former State Official Now Heads CWS

Community Work Services, a Boston-based agency, came to Rhode Island in 2013 as a program of Fedcap, hired by Craig Stenning, then director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to get a jump start on turning around the state’s developmental disability system in the wake of the interim settlement agreement of 2013 and the broader consent decree of 2014.

Between 2013 and 2014, Fedcap was awarded a total of about $1.7 million in state contracts. In 2015, Stenning joined Fedcap’s senior management.

As part of the state’s arrangement with Fedcap, CWS took over Training Through Placement (TTP), which had used the Birch Academy at Mount Pleasant High School as a feeder program for its sheltered workshop. There, adults with developmental disabilities performed repetitive tasks at sub-minimum wages, sometimes for decades, even when they expressed a desire to do something else.

At the hearing in May, Moseley, the monitor, told the judge that the number of former TTP clients who have found regular jobs in the community has remained “essentially flat” for the last four years. Most of the former TTP clients still received services from CWS. 

At that point, CWS itself had operated under one or another form of state supervision since May, 2016, for both programmatic deficiencies and substandard facilities at the former TTP building in North Providence.

CWS Nearly Lost License

In his most recent report Sept. 7, Moseley disclosed that state officials had notified CWS in early May – about two weeks before the federal court hearing - that they intended to revoke the agency’s license. But state officials changed their minds after a conference with CWS representatives, the monitor said.

Instead of revoking the license, the state Division of Developmental Disabilities (DDD) decided to give CWS one last chance by continuing the agency’s probationary status from July 1 to Sept. 30, with the possibility of only one more extension, until Dec. 31. The current status of the license is not clear. 

Moseley said CWS has brought on new staff, including a deputy director, a job developer and a new position with responsibilities for data and reporting.

According to the CWS website, it also has a new executive director, Craig Stenning, Fedcap’s Senior Vice President for the New England Region and the former BHDDH director.

Less than a year after Stenning’s departure from BHDDH – Governor Gina Raimondo failed to reappoint him – the DOJ and the monitor asked the U.S. District Court for assistance in enforcing the companion agreements of 2013 and 2014, citing a lack of progress by the state.

As a result, McConnell took up the combined cases and held the first hearing in January, 2016. Since then, he has held periodic reviews from the bench.   

Extensive State Oversight

Moseley’s Sept. 7 report described the extensive state supervision dedicated to CWS.  Licensing officials make monthly regulatory reviews of CWS. In addition, there are unannounced monthly visits coordinated with the state’s chief quality improvement officer for developmental disabilities. Supplementary phone calls and emails from state officials to CWS occur at least once a week.

Meanwhile, the state’s chief employment officer for developmental disabilities provides on-site technical assistance to CWS job developers, reviewing day-to-day activities and observing so-called “person-centered” planning meetings that are designed to put the needs and preferences of the clients first.

In earlier reports, Moseley has said the state simply does not have enough personnel to provide a fully functioning quality assurance program across the board to verify that some three dozen service providers are complying with the “person-first” principles and practices of the ADA. He has required DDD to take steps to create one.

DDD has 24 caseworkers and a handful of supervisory personnel and support staff to manage the needs of a total of about 4,350 individuals.  (About 3,700 receive day-to-day services,)

After learning that there had been little change at CWS since 2013, McConnell said he was angered on behalf of those who are “years late in terms of getting the services that the state agreed to,” according to a transcript of the hearing on May 23.

Addressing lawyers and state officials before him, he said, “The truth is that we all, you and you and me and then everybody else, have these hundred-odd people’s rights in our hands. “

McConnell continued. “I don’t take that lightly. I will use whatever powers that I have available to me to ensure that those individuals aren’t forgotten. Dr. Moseley always reminds me that we’re talking about individuals here and not alphabet soups and programs and whatnot. And this time it’s got to stick.”

Praise For Providence and Mount Pleasant

McConnell concluded on what he described as an “optimistic note” for officials of the city of Providence, who during the last few years have made substantial changes at Mount Pleasant High School, enabling special education students who otherwise would have been completely isolated to become part of the broader student body and to have school-to- work experiences in the community.

“Keep up the good work,” the judge told school and city officials. “It doesn’t mean you’re at the finish line, but you’ve showed us that it can be done.” 

A version of this article also appears in ConvergenceRI

 

 

RI DDD Officials To Discuss Next Steps in Shift Toward "Person-Centered" System

The Rhode Island Division of Developmental Disabilities has reviewed comments from 16 public meetings held since May on its intention to move toward a “person-centered” system, built on the idea that the primary focus of the division’s services should be the needs and preferences of each adult it serves.

DDD officials will summarize the comments they received from the public and discuss the next steps Wednesday, Sept. 28 at Rhode Island College and Monday, Oct. 2 at the Community College of Rhode Island in Warwick. Here are the details: 

WEDNESDAY, SEPTEMBER 27

TIME: 5:00-7:00 pm

PLACE: Rhode Island College, East Campus

             Forman Center Auditorium 030 (parking behind the building) 

             600 Mt. Pleasant Ave., Providence, RI

MONDAY, OCTOBER 2ND

TIME: 1:00 – 3:00 pm

PLACE: Community College of RI, Knight Campus, Room 4080

              400 East Ave, Warwick, RI 

              

 

 

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

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

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           

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

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

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.

RI DD Officials "Trying To Do The Right Thing," Says Judge In Review of 2014 Olmstead Consent Decree

By Gina Macris

Rhode Island’s efforts to implement a 2014 consent decree to help adults with developmental disabilities become part of their communities won plaudits from a federal judge July 28, althougth some officials indicated there’s still a long way before the changes permeate the system of state services. 

Judge John J. McConnell, Jr. said he is heartened “when a state entity is trying to do the right thing. It’s not the case where the state is acting in any way in bad faith.”

“Compared to about a year ago we are in a very different place,” he said.

In May, 2016, McConnell issued a 8-page order warning the state he would entertain contempt proceedings unless it moved forward with implementation of the consent decree, which at that time had been stalled for two years.

At the latest hearing, July 28, McConnell said there had been “positive movement” in the state’s efforts to carry out the requirements of the consent decree and urged state officials to “keep it up.” 

The judge acknowledged that sweeping changes in the leadership of state agencies responsible for the disabilities programs in recent months had left him feeling “quite nervous” about the state’s ability to comply with his orders, but he said “now it doesn’t feel that way at all.”

McConnell chose a relatively informal setting for the hearing, convening his review not in his courtroom but in the richly paneled library of the Beaux Arts federal building on Kennedy Plaza in Providence, and inviting participants around a conference table to remove their jackets.

A lawyer for the U.S. Department of Justice, Nicole Kovite Zeitler, and an independent court monitor, Charles Moseley, cited advances in the handling of bureaucratic issues that are pre-requisites for a turn-around in the system that will take years to accomplish. The areas they covered included:

  • The realignment of social work staff to better oversee changes in the way services are delivered
  • Additional steps intended to lay the foundation for an active, multi-faceted quality improvement effort involving the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Office of Rehabilitation Services (ORS)
  • Improved communication with service providers, and with the publicThe expanded availability of training and information on the principles of individualized planning and personal choice that are at the heart of the consent decree – and the federal law behind it.

There were, however, signs that, for some individuals who depend on developmental disability services, change has not yet arrived.

For example, Zeitler said that of 22 private agencies participating in a pilot program to encourage job-placements, 42 percent –nearly half - say they can’t take new clients.

Moseley said he “regularly” gets reports from families who say that they have been turned down by service providers they sought out.

Although the pilot project in supported employment is billed as an “incentive” program, participating agencies report privately they operate at a loss for each client they place in a job.

The legislature allocated $6.8 million for supported employment in the fiscal year which ended June 30, but the pilot program did not begin operations until January, and in the first six months it paid out a total of about $122,000 to participating agencies, according to BHDDH calculations obtained by Developmental Disability News.

Rebecca Boss, the BHDDH director, acknowledged there are “challenges” to delivering those supported employment services but did not elaborate. A report from Moseley to the judge submitted the day before the hearing said there have been multiple meetings between state officials and the providers to discuss various factors affecting the supported employment program, including “operational issues that are reported to be impeding the ability of the organizations to meet their placement goals.”

McConnelland the consent decree officials at the table spent considerable time discussing a relatively low employment rate of young adults – the very group most likely to have had the broadest experiences in high school, including school-to work internships. 

The participants acknowledged that the employment rate for that group, 32 percent, was artificially depressed, because the number of individuals in the young adult category has grown dramatically, from 151 to 497, in the last nine months.  It takes time to find the right job, Zeitler said. 

But the monitor said in his latest report to the judge that progress in finding jobs for young adults “has been slow.”  Even if one analyzes only the original 151 young adults and discounts 60 of them who are not receiving BHDDH services, the employment rate is 51 percent, Moseley said in the report.

He recommended that the state contact each of the 60 not receiving services to make sure they know that supports are available if they need them.

Clients recently interviewed by Zeitler and DOJ colleagues said they were sometimes “bored” with their daytime non-work activities, Zeitler reported. The Americans With Disabilities Act (ADA) says persons who receive public supports must have personal choice in deciding what they do with their time, both for work and leisure.

But the way resources are currently invested does not necessarily promote “inclusivity,” noted Boss, saying the department is hoping to do some “rebalancing” of the way money is spent.

The individual choice mandated in the consent decree implies one-to-one or small group staffing, assuming that a few friends want to do something together in the community. But a fairly rigid regulatory structure currently in place doesn’t allow for such staffing unless clients are deemed to have extensive disabilities.  

The Division of Developmental l Disabilities is in the process of rewriting all its regulations to change from a system that assigns funding based on the severity of a disability to one that stresses individualization and personal choice, or“person-centered planning,” in accordance with the ADA and the consent decree.

As Moseley noted, the state must make these changes anyway to comply with the broader federal Medicaid Home and Community Based Rule (HCBS). The federal-state Medicaid program pays for all developmental disability services in Rhode Island.

Like the consent decree, HCBS derives its authority from the 1999 Olmstead decision of the U.S. Supreme Court. The Olmstead decision re-affirmed Title II of the ADA, which emphasizes its primary purpose to integrate those with disabilities into the mainstream of society and respects their individual choices on the degree to which they wish to participate. 

The last time BHDDH attempted regulatory reform along similar lines, in 2015, an internal BHDDH work group came up with recommendations that would have cost tens of millions of dollars. The proposed changes did not move forward.  

In his most recent report to the judge,  Moseley said that the effort to gain greater flexibility over existing funding “is a positive move, but additional steps need to be taken to map out a process for ensuring that funding supports integrated person-centered day services” that meet the standards of the consent decree.

Zeitler said management officials of direct service agencies seem to understand the principles of individualized, or “person-centered” activity plans, but some direct care workers “don’t speak the language.” 

Zeitler suggested that more training is in order.  Although the training is available, tuition-free, Kerri Zanchi, developmental disabilities chief at BHDDH,  indicated there was no “quick fix” to this problem, given the high turnover in the workforce.

Zeitler, meanwhile, praised the way Zanchi has moved around staff to make the most of available personnel, calling the reorganization “very creative.”  

Zanchi has added four workers to the case management unit, reducing caseloads from 205 to 152 per person. Two of the workers came from the unit that determines eligibility for services and two came from a separate group that assesses the support needs of clients once they are found eligible for services. 

Another worker has been tapped to serve in the newly created position of transition coordinator, to serve teenagers and young adults moving from high school to adult services. The Division of Developmental Disabilities has hired a new residential coordinator to address housing options for those who do not live with their families.

An outside quality improvement expert enlisted by Moseley has said in a report that "there is a significant commitment to change" at BHDDH and ORS to ensure high program standards are implemented across the board. 

"But the staff available to implement change are stretched very thin," wrote Gail Grossman in a report that is part of Moseley's latest filing with the court. Grossman continued: "Serious consideration needs to be given to the need for additional staff resources if DDD (the Division of Developmental Disabilities) and BHDDH are going to develop, manage and oversee a strong QMIS (Quality Management and Improvement System) structure."

BHDDH has a unit entitled quality improvement, but its scope is limited to investigations of neglect or abuse of vulnerable individuals.

Click here for the monitor's latest report to the judge.

Related articles: Judge Willing To Intervene In RI Budget Impasse

Supported Employment Program Falls Short Of Initial Goals in RI

RI DD Director Invites Families to Help Overhaul Design of Services With Individual Needs in Mind

Photos by Anne Peters

Photos by Anne Peters

Kerri Zanchi, center, Director of the RI Division of Developmental Disabilities, is flanked by administrators Heather Mincey, left, and Anne LeClerc, right, as she addresses the audience at a public forum in Newport May 2. 

By Gina Macris

Beginning May 10, Rhode Island’s Division of Developmental Disabilities plans to involve the adults it serves, their families, service providers and advocates in a step-by-step process to overhaul the way it does business .

Kerri Zanchi, the new director of the division, told Aquidneck Island residents who attended a public forum May 2 at the Community College of Rhode Island that the initial discussions will inform an effort to re-write the regulations governing developmental disability services to put the needs and wants of its clients front and center. 

The changes have two drivers:

  • A 2014 consent decree requiring the state to correct violations of the Americans With Disabilities Act by providing employment supports and access to non-work supports in the community.
  • A compliance deadline of March, 2019 for implementation of a Medicaid rule on Home and Community Based Services (HCBS), which requires an individualized approach to care, treating individuals with disabilities as full-fledged members of their communities.  

Both the consent decree and the HCBS rule draw their authority from the 1999 Olmstead decision of the U.S. Supreme Court, which amounted to a desegregation order affecting all services for all individuals with disabilities.

 Zanchi used the term “person-centered” to sum up the kind of planning and practices that go into the new inclusive approach.  A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, elaborated.

A. Anthony Antosh

A. Anthony Antosh

“The way the system has worked forever is that someone else controls what people get. We want people with disabilities to get more control of their own lives,” he said. “Resources support part of their lives but not all of their lives,” he said.

He said that in several states, including Texas, Kentucky and North Carolina, faith-based support networks in various communities have resulted in a “dramatically broader network” of personal relationships for individuals with disabilities. “And 80 percent of them have jobs,” Antosh said.

To flesh out the concepts of individualization and integration and how they might work in Rhode Island,  Antosh and Zanchi will co-host a series of discussions to explore the idea and solicit comments throughout the month of May.

The first two sessions will be held in the morning and evening of Wednesday, May 10 at the Sherlock Center. (Details at end of article.)

 “It’s a lot of change. It’s a pivotal time,” Zanchi said. But “if you don’t have a strong person-centered practice, it’s really hard to move the system forward and comply with the consent decree and HCBS.”

Zanchi said she and her staff will pull together comments from all the public sessions and present the results to the public in the early summer, setting the stage for regulatory reform.

Howard Cohen

Howard Cohen

Howard Cohen, whose adult son has developmental disabilities, took a dim view of the current regulations.  While the goal was to “even up the playing field among the agencies” by establishing uniform rates of reimbursement, he said, the regulations resulted in “a lot of resources toward book keeping rather than managing care.” 

And “the last time, the regulations got ramrodded through,” Cohen said, an allusion to the regulatory changes adopted by the General Assembly in 2011 as part of “Project Sustainability.”

Kevin Savage, director of licensing for developmental disability services, said all those with a stake in the regulations – including families – will be invited to participate in writing new ones.

The new regulations will not be aimed at “correcting past mistakes” but will try to conform to the law reflected in the consent decree and in HCBS, he said. The process also is expected to result in 20 percent fewer regulations than there are now, Savage said.

Zanchi emphasized that compliance with HCBS will mean a change in case management, or the formal approval process for allocating resources to each person’s program of services.

Currently social workers, who have an average caseload of 205 clients per person, share the case management responsibilities with provider agencies, she said. But HCBS sees an inherent conflict of interest in providers making decisions about the services they themselves furnish, to the possible detriment of the individualized goals of the client.

Zanchi said some states use third-party case management and others have state employees do the job, with a “firewall” between them and the fiscal arm of state government.  In Rhode Island, changes in case management won’t come until 2018, she said.

She also told family members that the state would explore expanding the options for residential care, an issue of particular concern to older parents in light of a virtual freeze on group home admissions. HCBS expects states will move away from group home residential care.

After the meeting, Zanchi was asked how changes in practice brought about by the new regulations would be funded.

“When we figure out what it (the service system) would look like, then we need to figure out the funding for it,” she said.

During the forum, Dottie Darcy, the mother of an adult with developmental disabilities, wondered aloud how officials would “develop a system, without money, to account for the needs of all the people. At some point funding has to be addressed,” she said.

“I think it’s outrageous” that service providers “can’t keep workers” because they can’t pay enough, Darcy said.

She lamented a lack of organized advocacy with members of the General Assembly on behalf of individuals with developmental disabilities.

Claire Rosenbaum, a member of the Rhode Island Developmental Disabilities Council, said it is in the process of trying to revive its family organization to do exactly the kind of work Darcy described, “but it’s not there yet.”

The first two sessions on “Person-Centered Thinking and Planning” will be Wednesday, May 10, from 10 a.m. to noon and from 6 p.m. to 8 p.m., at the Sherlock Center on Disabilities on the campus of Rhode Island College, 600 Mount Pleasant Ave., Providence. These meetings will be of particular interest to families who direct their own programs of services for family members, but all sessions in the series are open to the public.

Those wishing to attend should RSVP with Claire Rosenbaum by May 8 at 401-456-4732 or crosenbaum@ric.edu

Judge McConnell: Consent Decree Progress Should Not Distract State From Long Road Ahead

By Gina Macris

U.S. District Court Judge John J. McConnell, Jr. says Rhode Island has made considerable progress in laying the groundwork to comply with a three year-old consent decree aimed at improving the lives of adults with developmental disabilities.

But that progress should not distract all concerned from “how far we have to go,” McConnell said.

In a quarterly review of the case on March 10, McConnell called attention to the remarks of the U.S. Department of Justice (DOJ), Nicole Kovite Zeitler, who spoke of the state’s progress and the unrealized potential of the consent decree to transform lives for a generation. 

“From where we were a year ago the work the state has done is commendable,” Zeitler said, “but the ultimate goal of the 2014 agreement is the transformation of services” for adults with developmental disabilities.

“These people have goals, just like anyone else,” Zeitler said.

Yet, a recent review of the day services typically offered adults with disabilities conveys a lack of purpose.  “There’s a feeling that attending a day program is just something people do,” she said.

The DOJ is committed to ultimate compliance with the consent decree, Zeitler said, but the decree means more than financing plans for services.  

Rather, the effort must put individuals’ goals and dreams at the center of the process and incorporate ongoing quality assurance practices to ensure continued compliance with the consent decree, she said.

Zeitler referred to a review of the day services of 21 adults by consultant William H. Ashe that was incorporated into a recent report to the court by the independent monitor in the case, Charles Moseley.

In many cases, Ashe found the signposts of individualized or “person-centered’” planning absent.  The service planning process required by the state  ”feels rigid and automatic,” Ashe noted. ”The ISP (individual service plan) for a person this year may often look remarkably similar to the one that was done last year. The funding that agencies receive is based on assessed ‘functioning level’ and not based upon what people may want or actually need,” Ashe said.

”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,” he said.

The monitor, Moseley, has given the state notice in a recent report to the court that he wants changes in the funding and planning process that meet the “person-centered” requirements of the consent decree. The state must give him progress reports quarterly, beginning April 1.

McConnell asked why the percentage of young adults finding employment was so low – only 22 percent. Moseley said the percentage dipped as the state complied with a request he made last fall to fully identify all eligible individuals who have left school since 2013.

The count of the so-called “youth exit” group initially stood at 151 young adults with developmental disabilities. By November the figure had jumped to 501, and, now is 516, Mary Madden, the state’s consent decree coordinator, told the court.  

The number of young adults with jobs is 109, according to the latest reports of the state to the monitor.

Referring to a provision of the consent decree decree which requires “all” young people to have jobs the same year they leave school,  McConnell asked why the employmentbenchmark for young adults is so “aggressive”.

Zeitler said the goals were designed that way because the generation going through school now is learning the skills necessary to prepare for adult life.

These young people have the most to gain from the consent decree and the most to lose without it, Zeitler said. They know their own potential, but under the old system they would spend years in isolation from the larger community, she said.

The 2014 consent decree settled findings of the DOJ that the state relied on sheltered workshops and segregated day programs in violation of Title II of the Americans With Disabilities Act, which was reaffirmed in the Olmstead decision of the U.S. Supreme Court in 1999. The Olmstead decision said that individuals with disabilities have a right to receive services in the least restrictive environment that is therapeutically appropriate, which is presumed to be the community.

The Rhode Island decree is not the first Olmstead enforcement action in the country, but the first one that addresses daytime programs that segregate adults with disabilities. Because they ard the DOJ.

A year ago, the state had made virtually no effort to implement the consent decree and lacked the financing, data, and staff to respond to requests made by the monitor. After an evidentiary hearing in April, McConnell issued a multi-faceted order which put the state on short deadlines for responding to discrete tasks – or face contempt proceedings.

So far, the order has brought results:  $11 million more in federal-state Medicaid funding, a larger staff to work on policy changes, and better cooperation and communication among the agencies responsible for implementing the agreement – the Department of Behavioral Healthcare, Developmental Disabilities, the Office of Rehabilitation Services, and the Rhode Island Department of Education.

One part of McConnell’s order has led to an incentive program for service providers to find jobs for their clients and help them stay employed. That program has placed 20 new hires since January, although Zeitler said the state needs to have “frank discussions” with service providers about continued gaps in job placement targets in two of three segmentsof the population represented by the consent decree.    

Moseley, the monitor, has followed McConnell’s lead in adopting short-term deadlines for specific tasks he has assigned the state. One such inquiry led to the identification in November of young adults with autism or multiple disabilities who hadn’t previously been counted as part of the consent decree population. That’s what boosted the so-called “youth exit” population to more than 500.

More recently, Moseley has enumerated dozens of tasks relating to the individualization of services, better internal quality improvement efforts, methods of funding, employment, and other consent-decree issues, along with short-term deadlines for responses.

Jennifer Wood, General Counsel to the Secretary of Health and Human Services, the head of the state’s response to the consent decree, said Rhode Island now has the bureaucratic “infrastructure” to delve into the actual service delivery system.  “Person-centered planning is at the heart of that,” she said.

The next court review will be scheduled for mid-July, but McConnell said he wants to receive interim progress reports from Moseley.  McConnell also noted that from time to time, he receives letters from parents and makes them part of the case file, which is a public record. 

Related articles: 

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

"Monitor Seeks Changes In BHDDH Funding Methods to Satisfy Consent Decree"

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