Group Home Inspections Show Deficiencies; Need for Ombudsman to Add Transparency

In the RI Senate Lounge, Maria Montanaro, director of the RI Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, left; listens to the report on group home  by Elizabeth Roberts, Secretary of Health and Human Services.

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By Gina Macris                               

A random inspection of 30 Rhode Island group homes for adults with developmental disabilities did not show systemic problems as severe as the ones at a state-run facility where a resident suffered an unexplained injury and died in February.

But the Executive Secretary of Health and Human Services, Elizabeth Roberts, told the Rhode Island Senate Committee on Health and Human Services that the inspections revealed many operational lapses at individual homes, including medication errors. She said accountability and transparency must improve in all the group homes in the state.

Roberts said she favors legislation that would create an ombudsman for individuals with developmental disabilities and their families, similar to the Child Advocate and the Mental Heath Advocate. 

Roberts also said there is a need to remove the conflict now inherent in the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) licensing and investigating its own group homes.

BHDDH director Maria Montanaro said she has learned that during a previous administration, management did not always follow the professional recommendations of the investigatory unit.

While the recent inspections found no life-threatening situations, they did raise medical concerns, including numerous overdue physical exams and various medication errors. For example, in 10 of the 30 homes, there were medication orders that weren't filled. There was also a lack of documentation of numerous other requirements, including many related to communications with residents and guardians.

According to a summary of the findings, 17 of the 30 homes were not carrying out all provisions of behavioral support plans written for residents with behavioral problems.

In 15 homes, residents were not receiving all the services required by the individual service plan, the “master plan” of activities and supports. 

Another 10 homes have participants who do not have these “master plans” at all.

 In 14 of the 30 homes, inspectors heard about “staffing issues” that were not described in more detail in the report given to the committee.

Low pay and high turnover are pervasive problems in the developmental disability system. Governor Raimondo has asked for higher pay for workers in this field in her budget for the next fiscal year. 

The report did not specify where the deficiencies occurred, but listed the names of all the group homes surveyed and the agencies which operate them. In the report, RICLAS homes are operated by the state, and the remainder are privately operated.

All the group homes will be notified of specific violations and given 30 days to file corrective action plans, according to the report.

The unannounced inspections were prompted by the death Feb. 15 of Barbara A. Annis, 70, who lived in College Park Apartments in Providence – a state run group home that operated more like a nursing home.

Five of the 27 staff members have been put on paid leave and the facility’s license has been revoked. The Rhode Island Attorney General’s Office and the Rhode Island State Police are conducting criminal investigations.

At the Senate HHS briefing Tuesday, Roberts said, “We have responsibility for the care and well-being of some of the most vulnerable Rhode Islanders. I take that responsibility very seriously and I hold the entire Health and Human Services Secretariat accountable for delivering high-quality services.”

Roberts said an ombudsman would bring a new level of transparency to the state’s developmental disability system, serving as a conduit for releasing information of public interest.

“Public reporting on investigations is extremely limited by current statute and regulation,” she said. “Current statutes restrict BHDDH from releasing information most other – if not all other – licensing bodies would be obligated to release,” Roberts said.

She suggested she would support new laws that would “protect residents’ privacy and ensure that the public – especially families who count on these residential services – are aware of issues with resident safety.”

Roberts said she has asked Montanaro to begin a review of the department’s licensing and investigatory procedures.

Montanaro said during initial remarks at the hearing that her department has a “robust” investigatory arm, but she later acknowledged that three of the five investigative  positions have been vacant sometime in the last fiscal year.

Two of the vacancies were due to the fact that the positions were on loan from the Department of Human Services, but funding for those positions did not come through, Montanaro said. She said Secretary Roberts straightened out that problem. Interviews are now underway to fill the last remaining vacancy, she said. 

BHDDH had two investigators working at the time Annis died. The head of the investigatory unit told Montanaro she had noticed a pattern of problems at College Park dating from the previous year, Montanaro recalled. That was one of the factors that led to the three week-long series of group home inspections, performed with assistance from inspectors from the Department of Health.

After the hearing, Roberts acknowledged that unless an investigator notices a pattern of problems and notifies a supervisor, it is not easy to for management to spot system-wide concerns.

“We haven’t had an organized database to do that,” she said, repeating her contention that part of the problem is overly restrictive state confidentiality laws. She said public reporting is one of “a number of ways to focus on consumers’ needs and public accountability.”  

DOJ Seeks up to $1 Million a Year from RI For Consent Decree Violations; State Objects

By Gina Macris

The U.S. Department of Justice is seeking penalties of up to $1 million a year from the State of Rhode Island if it does not move immediately to provide the job-related support services and day community programs for adults with developmental disabilities like it promised two years ago.

Employment-related services are at the heart of a 2014 consent decree in which the state agreed to shift away from reliance on sheltered workshops and segregated day programs and instead move toward integrating adults with developmental disabilities into the larger community. 

After two years of“failed outcomes and missed deadlines,” the state has shown that “compliance in this case requires accountability measures, not just deadlines,” according to a proposed order drafted by DOJ lawyers for the review of U.S. District Court Judge John J. McConnell, Jr. 

 In response,  Marc DeSisto, lawyer for the state, called the DOJ order a “pre-determined contempt sanction ” that denies the state procedural safeguards, including a provision in the consent decree that allows the state to show it put forth its“best efforts,” but failed to comply because of factors beyond its control. 

The state did present evidence of its efforts in a hearing April 8. The DOJ argued in its request for sanctions that the “hearing revealed– and the state admitted – that it has only been through this Court’s continued attention and involvement that the state has taken any real steps toward compliance.”

The Justice department lawyers said the financial sanctions will “facilitate compliance” by addressing a barrier the state itself has identified – lack of funding. 

Without the Consent Decree Compliance Fund to provide “consequences for violations, the proposed order could end up being just another plan that the state fails to implement.” according to the DOJ filing. 

The judge has not yet responded to the DOJ proposal, submitted May 6, and DeSisto’s response, filed May. 12. 

McConnell made it clear from the bench just two weeks ago, however, that he would take “swift and dramatic” action to enforce compliance, holding the state responsible without distinguishing between the Governor and the General Assembly. 

The General Assembly is heading into final budget deliberations during the next three to four weeks.  The May Revenue and Caseload Estimating Conference has projected that the state will have $47.5 million more in revenue than Governor Gina Raimondo counted on in February, when she submitted a combined $9-billion fiscal plan for the remainder of the current fiscal year and the next one.

It remains unclear how much money the state needs to correct a structural deficit in the developmental disabilities budget and keep pace with the requirements of the consent decree during the next fiscal year. 

Raimondo has proposed an additional $24.1 million for developmental disabilities through June, 30, 2017, with $19.3 million of that total coming from reductions in residential costs. So far, very little of those savings have materialized, according to information the state Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH) provided to the Senate Finance Committee about three weeks ago.

The savings depend on voluntary moves by some 300 group home residents into shared living arrangements with families throughout the state. Shared living has been available in Rhode Island for about 10 years, with 267 individuals taking that option at the end of the last fiscal year..Since July 1, 2015, the number of shared living arrangements has increased by 21, .according to the most recent figures made public by BHDDH.

Even if the added $24.1 million can be assured and the General Assembly approves Raimondo’s request, it is not clear whether that sum would be enough to satisfy the requirements of the proposed court order

 Neither the latest DOJ filing nor the consent decree itself puts a number on the cost. The decree says only that its requirements will be “fully funded.”

The proposed order takes a highly prescriptive approach, setting out a series of detailed benchmarks and deadlines for the remainder of the year, most of them during the next six weeks. 

The DOJ’s proposal was signed by Vanita Gupta, head of the civil rights division, and other officials, including trial attorneys Nicole Kovite Zeitler and Victoria Thomas. 

For each goal the state fails to achieve on time, it would be required to contribute to the Consent Decree Compliance Fund at a rate of $5,000 a day for as long as it remains in violation. In addition, the state would be required to pay $100 a day for each person affected by the consent decree “whose employment or integrated day services are delayed or interrupted as a result of violation of this order,” according to the DOJ’s language. 

At the evidentiary hearing April 8, there was much testimony about individuals aged 18 to 21 with developmental disabilities whose whose applications for adult services languish until shortly before they turn 21, leaving insufficient time to put a good program of adult services together. When BHDDH finally determines that the young adults are eligible for funding, they often go from the routine of a busy school day to sitting at home doing nothing, according to testimony.  

Finding appropriate services from a private provider is a a challenge for families. Agencies routinely refuse new clients because BHDDH does not them the full cost of providing the necessary supports.

If the proposed order is accepted by the federal court, the court monitor in the case, Charles Moseley, would oversee compliance and determine the amount due to the Compliance Fund. The monitor, in consultation with the DOJ and the state, also would decide how the money would be used to “fund consent decree activities that directly benefit target population members,” according to the DOJ’s filing. 

DeSisto, in his response for the state, argues that the proposal improperly delegates the authority decide individual fines to the monitor, when it should be the prerogative of the Court. As proposed, he said, the state would only be able to appeal after a penalty has been assessed. 

The corrective action topics and corresponding deadlines:   

Tools For Verifying Compliance

• May 30: The state would report to the DOJ its progress in developing a continually updated or “live” database that would allow federal officials to see how money is spent on required services for each person affected by the consent decree – at least 3400 people.

• June 30: The state would provide federal officials access to the database or a list of entries from which the judge, the monitor, and the DOJ could select to verify compliance.

• July 5: The monitor would give the state the list of records federal officials se;ect for verifying compliance. 

• July 12: The state would turn over the records the federal officials sought.  For example, federal officials would seek to determine whether all young adults who left school during the 2015-2016 school year had supported employment placements in the community by July 1, as required by the consent decree.

Funding Employment-Related Services 

• July 1: The state would implement a new model for reimbursing service providers that is flexible enough to cover the costs they incur. The current reimbursement system pays only for the time that workers spend in face-to-face contact with clients but not other activities like seeking out potential employers.

• July 1: In funding an array of services for a particular consumer, BHDDH would earmark some funds for supported employment. Currently consumers must give up something else to get employment-related services.  

• July 1: The state would “appropriately increase salaries, benefits, training, and supervision for employees of private agencies who work directly with adults with intellectual and developmental disabilities

• July 1: The state would implement at least some performance-based contracts with service providers that link funding to numerical targets and implementation timelines for “quality” job placements.

•  Dec. 31: The state would show evidence that all service providers have signed performance-based contracts.

• Dec. 31: The state would file with the court examples of weekly activity plans used by each provider of community-based day services that has received additional funding for those supports required by the consent decree.  

Assessment of Individual Need and Funding

• June 1: BHDDH would amend its policy for determining an invidual’s need for services and supports to make it clear that this assessment process, called the Supports Intensity Scale (SIS), remains separate and apart from considerations of individual funding levels.

• June 30: BHDDH would file with the court agendas or meeting minutes that demonstrate that all SIS interviewers have been trained in the change to the policy.

CAREER DEVELOPMENT PLANNING

• June 1: The state would finalize a plan for ensuring that representatives of BHDDH and the Office of Rehabilitation Services of the state Department of Human Services (ORS) consistently attend annual educational planning meetings for high school students with developmental disabilities, with an eye toward their transition to adult services

• June 30: BHDDH, ORS and the Rhode Island Department of Education (RIDE) must implement ongoing training in the use of career development plans and must provide ongoing supervision to ensure that the plans are utilized as envisioned by the consent decree

•  June 30: RIDE must train all school census clerks to accurately report the number of career development plans in place

•  June 30: The state would hire a Program Developer and Employment Specialist

Communications

• June 1: The state would finalize a detailed communications plan in which some information is disseminated to the public and other information is sought from the community.

Organizational Activities

•  June 1: The state would finalize a detailed project management plan for consent decree activities, showing the respective responsibilities of BHDDH, RIDE and ORS. 

•  June 1: The state would finalize a similar plan for engaging with individuals moving from school life to adult services, with the roles of each of the three agencies delineated.

The proposed order also requires the state to catch up with back pay it owes the court monitor, Moseley, and the state’s consent decree coordinator, Mary M. Madden, and to pay them on time in the future.

At the April 8 hearing, Madden said she had not been paid since she was hired in January. At the same time, Moseley, who began the job late in 2014, said he had received his first check at the end of March, 2016. 

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

Photo by Anne Peters

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For readers wishing additional information:

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

·        Here is variance language from the consent decree:

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

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

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

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

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

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

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

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

The entire consent decree can be found at this link.

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

Photo by Anne Peters

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

By Gina Macris

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

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

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

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

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

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

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

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

Photo by Anne Peters 

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

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

Efforts to get additional information from BHDDH were unsuccessful Wednesday.

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

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

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

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

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

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

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

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

Photo by Anne Peters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Judge in Disabilities Case to Mull Costly Sanctions Against RI

By Gina Macris

U.S. District Court Judge John J. McConnell, Jr. said May 2 he is prepared to take “swift and dramatic action” if the state of Rhode Island fails to adequately fund a 2014 consent decree intended to correct longstanding  violations of the Americans with Disabilities Act.

U.S. District Court RI

Nicole Kovite Zeitler, lawyer for the U.S. Department of Justice, said she plans to file a formal request  asking the judge to order the state to contribute to a “consent decree compliance fund” unless adequate funding is secured by “a date certain” through the budgetary process, now underway in the General Assembly.

Neither Zeitler nor the judge put a specific dollar amount on the cost of the consent decree, although McConnell said he wants to see the money in Governor Gina Raimondo’s budget proposal enacted “at a minimum.”

Zeitler and the state’s lawyer, Marc DeSisto, will take one week to decide whether they can jointly submit a proposed order to McConnell, according to an informal schedule the judge approved from the bench.

If the two sides cannot work together, the DOJ will draft its own proposal. McConnell will hear arguments and then make a decision. The date of the next hearing has not yet been set.

The developmental disability system in Rhode Island has been underfunded for a decade, Zeitler said.

Moreover, she said she is concerned that the cost of the consent decree is being misrepresented in budgetary discussions. 

Families fear that the state is shutting sheltered workshops and providing nothing in their place, and “we share those concerns,” she said.

Zeitler, meanwhile, said the cost of the consent decree is being characterized in budget hearings at the State House as $1.8 million, but the consent decree requires changes throughout the developmental disability system.

The sum of $1.8 million happens to be one line item in the budget of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for subsidizing one-time start-up costs incurred by direct service providers who convert to community-based services from the segregated employment and day programs that the DOJ found in violation of the ADA.

Impact of Budget Plan Unclear

In the next 14 months, Raimondo wants to put an additional $24.1 million into private agencies that provide most of the direct services to adults with developmental disabilities, but whether her budget actually will achieve that goal remains open to question.

The way the budget document is now written, $19.3 million of that sum would come from savings in residential costs as occupants of group homes move into less costly shared living arrangements with individual families throughout the state. The proposal counts on 100 group home residents making the transition by June 30 on a strictly voluntary basis and another 200 moving in the next fiscal year, which runs from July 1 to June 30, 2017.

In the last ten months, however, only 21 individuals have entered shared living arrangements, accounting for a projected savings of about $200,000 in the current fiscal year, according to BHDDH figures.

There are other uncertainties about the budget.

The independent monitor in the case, Charles Moseley, and the DOJ are looking for a reconfigured method of reimbursing service providers that would allow them flexibility to individualize community-based services while requiring that they meet performance targets.

The new reimbursement model would come with increased funding to the agencies, but BHDDH director Maria Montanaro told the Senate Finance Committee last week there isn’t enough money in the Governor’s budget plan to extend this methodology to all the service providers. Instead, Montanaro proposed a pilot program involving a “subset” of the service providers.

A spokeswoman for the provider agencies, Donna Martin, said she “respectfully disagreed” with Montanaro’s  approach. 

“If we target certain agencies (for pay hikes), we will not be able to recruit staff for any other program,”  said Martin, executive director of the Community Provider Network of Rhode Island (CPNRI) .

“We are facing an incredible staffing crisis,” she told the Senate Finance Committee.

 “Our staff are working minimum wage jobs. We are competing with McDonald’s” for workers, Martin said.

According to the current reimbursement rules, BHDDH pays service providers only for the time clients spend in direct contact with daytime support staff. That person-to-person interaction must be reported for each client and each worker, in 15-minute increments, throughout the day. Agencies are not paid when clients are absent, for whatever reason.

Job-scouting activities, in which a service provider might meet with a potential employer, are not part of the standard funding allocation package for individual clients.Clients who want employment supports must give up some hours in another category to get this funding. 

Until 2011, service providers received a set per-person allocation for a bundle of services that could be individualized, depending on a client’s needs.  Martin indicated that providers need a similarly flexible arrangement going forward to meet their obligations under terms of the consent decree.

Montanaro, meanwhile, said during the Senate Finance Committee meeting that a recent planning exercise came up with a $30 million price tag for applying a redesigned reimbursement model to all the service providers. She said that price tag was “impossible,” at a time when the department faced a $7 million deficit in the current budget.

Delays in Eligibility Decisions

Meanwhile, a backlog of applications for adult services that has caught the attention of the court could put additional strain on the budget that is not yet defined.

A BHDDH official told parents last week that there is a “very significant backlog” of pending applications for eligibility. At an average annual cost of $50,000 per client, an increase of 100 to the BHDDH caseload would add $5 million to the BHDDH budget.

BHDDH has been under pressure from the court to determine eligibility for young people promptly as they approach their 18th birthday, when they are defined by law as eligible for adult developmental disability services as long as they meet certain criteria.  

Since March, the Consent Decree Coordinator, Mary Madden, and other state officials have met with representatives of applicants for adult services who have experienced “inordinately long delays” in getting eligibility determinations as well as “receiving inadequate communication about the progress of their applications,” according to a report to the court submitted by the state last week.

“Those individual cases have been resolved,” the report said, but Madden told the court Monday the backlog still exists. She could not say how many applications are stuck in the pipeline.

Action Items Long Past Due

Many of the questions put to Madden and to Jennifer Wood, Deputy Secretary of the Executive Office of Human Services, had to do with pending consent decree action items that are long past due.

The state and the monitor were to have settled on a protocol for reporting compliance by Oct. 1, 2014, but it became common knowledge to dozens of individuals following the implementation of the consent decree that Moseley was having trouble getting access to BHDDH data throughout 2015.

Wood reported Monday that a confidential electronic data base allowing the monitor to track compliance according to each individual affected by the consent decree will go online in 2017, although an interim solution, in a quarterly report, will be available July 1.  

A Quality Improvement initiative was to have been launched by Nov. 1, 2014, but it is still waiting for the appointment of a quality improvement director. Funding for the position has been authorized. Each individual affected by the consent decree was to have an individual career development plan by Jan. 1 of this year, but those are not all in place.

The performance-based contracts that Montanaro said would be part of a new pilot reimbursement program with a portion of the service providers were to have been implemented system-wide by Jan. 1, 2015. 

A public education plan to explain the requirements and the philosophy of the consent decree was to have been up and running Sept. 1, 2014.

BHDDH officials submitted what they believed was the final version of the public education plan to the monitor on April 1, but Madden told the monitor Monday that “events of late have caused us to think how many more people need to be involved.”

She did not elaborate. BHDDH officials who hosted a “town hall” meeting with families and consumers in Warwick last week were met with a wave of hostile comments about the consent decree and disability services.

RI Families Blast Consent Decree and DD Services

By Gina Macris

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

Debra Feller

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Gina Macris

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

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

        MARIA MONTANARO

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

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

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

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

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

DiPalma questioned Montanaro sharply.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI Senate Would Require Governor's Workforce Board to Plan Jobs for Disabled

By Gina Macris

The Governor’s Workforce Board in Rhode Island would be required to include individuals with intellectual and developmental disabilities in its initiatives, policies and actions involving workforce development, under provisions of a bill that has passed the Senate.                                 

The legislation (2016-S 2476), introduced by Sen. William J. Conley, Jr., (D-East Providence and Pawtucket) also would add representatives of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals to the Career Pathways Advisory Committee of the Governor’s Workforce Board.

Similar legislation (2016-H 8035) has been introduced in the Rhode Island House by Rep. Gregg Amore (D-East Providence). 

“This is an opportunity for us to transform our workforce systems in a planned fashion to transition adults with intellectual or developmental disabilities into community-integrated settings,” Conley said in a statement.  

In the last six months, the U.S. Department of Justice and an independent court monitor have  turned to the U.S. District Court for assistance in enforcing terms of a two-year-old consent decree in which Rhode Island agreed to stop violating Title II of the Americans with Disabilities Act by phasing out sheltered workshops that paid subminimum wages to adults with disabilities. 

In place of segregated employment and day programs, the state agreed to help people with intellectual and developmental disabilities find and keep jobs in the community and participate in integrated non-work activities. 

Title II of the ADA, underscored by the so-called Olmstead decision of the U.S. Supreme Court in 1999,  in essence says that individuals with developmental disabilities have a right to live, work, and play in their communities, just like anyone else. 

“This bill affords individuals with disabilities the same access to job training and career opportunities as all other Rhode Islanders,” Conley said, acknowledging that the state “has done little to help the developmentally disabled find gainful employment.” 

The Governor’s Workforce Board is the primary policy-making body for workforce development issues in Rhode Island, with authority to allocate state Job Development Funds and federaltraining funds under provisions of Title I-B of the federal Workforce Investment Act.

Montanaro to Meet with Families and Individuals with Developmental Disabilities

By Gina Macris 

Rhode Islanders with intellectual or developmental disabilities and their family members will have a chance to speak with Maria Montanaro, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals Wednesday, April 27, from 4 to 6 p.m. at the Buttonwoods Community Center, 3027 West Shore Rd., Warwick. 

The session will be the third such community meeting for Montanaro, who was appointed to the position by Governor Gina Raimondo in January, 2015. 

 Montanaro is expected to take questions from the audience and to discuss reforms underway in the division of developmental disabilities, one of the state agencies under federal oversight until Jan. 1, 2024, in connection with the way it delivers daytime supports to adults receiving its services. 

The division is gearing up for a shift from group home residential care to shared living arrangements with individual families throughout the state.  The move, intended to add 300 adults to shared living arrangements by June 30, 2017, would free up millions of dollars that would be reinvested in supported employment services and other integrated activities as required by a 2014 statewide consent decree with the U.S. Department of Justice. 

There are now roughly 1300 people with intellectual or developmental disabilities living in group homes in Rhode Island. At the end of March, there were 288 individuals in shared living arrangements, an increase of 10 during that month, according to the most recent figures publicly available.

For directions to the Buttonwoods Community Center, click here. 

DD Budget Plan Scales Back Shared Living Expansion in Rhode Island

Hearing Highlights Two Systems of Care

By Gina Macris

Rhode Island’s developmental disabilities agency has sharply scaled back plans to move residents of group homes to less-expensive shared living arrangements, a strategy to free state money for measures required in a 2014 consent decree to remedy violations of the Americans With Disabilities Act. 

That information emerged at a RI House Finance subcommittee hearing Tuesday, April 12 on the budget of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

 The hearing by the Human Services subcommittee lasted more than three hours, covering public comments on behavioral healthcare, mental health, and state hospitals as well as developmental disabilities. Even at that length, some who came to testify did not have a chance to speak before the schedule was overtaken by another budget hearing that started late in the afternoon. 

As a consequence, legislators did not hear about the 2014 consent decree under review in U.S. District Court. JudgeJohn J. McConnell, Jr. said on April 8 that he will hold the General Assembly responsible, if necessary, for funding  reforms to integrate persons with disabilities in their communities as required by the ADA.  

The hearing did draw comments highlighting differences between Rhode Island’s two systems of care for people with developmental disabilities: Care provided through private agencies and care provided through state-run group homes. 

Representatives of private agencies that would provide most of the services required by the consent decree pressed for a provision in Governor Gina Raimondo’s budget plan that would providea wage increase of 45 cents an hour for workers who are so underpaid they must hold down two or three jobs to survive. 

Union representatives for employees at state-run group homes, on the other hand, said that the plan to shift residents of group homes into shared living arrangements to provide more funding for the private agencies would come at the expense of their union jobs. 

Shared Living Target Number Cut

In February, when Raimondo submitted a combined budget proposal for the remainder of the current fiscal year and the next one, ending June 30, 2017, she proposed transferring a total of 500 people, about 38 percent of all group home residents, into shared living. 

On Tuesday, when a member of the House fiscal staff presented the BHDDH budget, the target number of 500 had been rolled back to 300 for the same 15-month period.

The original number had been widely described as very aggressive, especially in light of the fact that shared living is a mutual decision between the developmentally disabled individual and the private family that takes time to evolve, according to experts. 

In the month of March, 10 people with disabilities moved from group homes to shared living, bringing the total number of individuals living in private homes to 288 statewide, according to Linda M. Haley, a member of the House fiscal staff. 

BHDDH has budgeted a proposed 46 percent cut, or $15.5 million, to a system of 27 state-run group homes, with the current budget of about $33.2 million reduced to about $17.8 million in the next fiscal year, beginning July 1. 

The group home population at the state-run homes, currently 180, would be cut in half, with 90 remaining at the end of the next fiscal year, according to budget detail presented by Haley of the fiscal staff. 

Her presentation projected a total of $13 million in savings from group home residents in both the public and private system moving to shared living arrangements in the next fiscal year. 

Rep. Eileen Naughton, D-Warwick, chair of the human services subcommittee, asked the mother of a man with autism living in a group home what she thought of shared living. 

“I’m not a fan of it for my son,” said Robin Archambault. Besides autism, her son, Ryan, has a developmental disability and has been diagnosed with bipolar disorder, she said. 

Tory Flis, the manager of the home where Ryan Archambault lives, said “shared living is a wonderful level of support for some people, but it won’t work for everyone. “It has viability, but what is really needed is more person-centered services.” 

Personal choice through an individualized plan of support is at the heart of the consent decree, which derives its authority from the 1999 Olmstead decision of the U.S. Supreme Court. The Court affirmed the right of individuals with disabilities to live, work, and play in the least restrictive environment that is appropriate. 

Crisis in Staffing Direct Services

The direct support staff at the private agencies who would carry out the requirements of the consent decree are paid an average of about $11.55 an hour, according to the state’s figures.  

Tom Kane, a spokesman for 23 private agencies providing most of the direct care in Rhode Island, told the legislators that employees now average $10.77 an hour.  At those wages, the workers must hold down two and three jobs to make ends meet, according to Kane, group home manager Flis, and others in the field. 

Archambault, the mother of the man with autism, said the high turnover “saddens me.” The workers “are getting burned out” and leaving, she said. “As a parent, this scares me.” 

Kane, who is executive director of Access Point RI, said a living wage for a parent with one child at home is nearly $22 an hour. Among the developmental disability agencies, 48 percent of employees qualify for public assistance, and there’s a 33 percent turnover rate, he said. With each replacement, agencies put in about $5,000 in training, he said. 

Kane said the state reimbursement rate is so low that the private agencies operate at a loss of $5,700 a year for each person on the payroll because the state does not cover the full amount of employer-related taxes and benefits. 

Governor Raimondo’s proposed 45- cent hourly wage increase for direct service staff is “very generous,” Kane said, “I still believe it is insufficient.” With the raise, agencies would still operate at a loss for each person they employ, although it would be reduced to about $4,500 a year, he said. 

“In Rhode Island, like the rest of the country, there is a real crisis” in providing direct service for people with developmental disabilities, he said. 

“As was stated earlier,” Kane said, “you can go to a fast food restaurant and make more money. Why would you not want to do that?” 

“We are basically flat-funded where we were in 2006,” Kane said. 

“We have had positive work experiences with this administration,” he said, referring to BHDDH director Maria Montanaro and her deputies. 

“We ask that you support the Governor’s budget” and add “any other money you can find” to alleviate the crisis in the developmental disability service system, Kane said.                                                                           

State Employees Fear for Their Jobs

Jim Cenerini, legislative affairs coordinator for Rhode Island Council 94 of the American Federation of State County and Municipal Employees, spoke for nearly 300 state employees  who staff the state-run group homes.  

He said the proposed cut of nearly 50 percent of the state group home budget has created a great deal of unease among workers fearful they may lose their jobs. “I’m not sure how this is happening without closure of a group home or layoffs,” he said. 

“We support the private providers, but this looks like it would destroy our capacity to provide care,” Cenerini said. 

He said higher costs in the state-run homes reflect the needs of patients who are generally older and tend to be more medically compromised than in the private system, but costs also reflect “former Ladd employees who have strong union representation.” 

He said BHDDH has not explained to the union how the proposed budget cut would play out. 

In response to a reporter’s question shortly after Raimondo announced her budget proposal, BHDDH officials said that RICLAS employees displaced by group home residents moving to shared living would be able to transfer to vacant jobs. 

Cenerini said BHDDH wanted to move all residents of state-run facilities into the private system last year, but the union negotiated two cost-cutting agreements instead. The state never acted fully on those agreements, he said. 

“We are willing to make efficiencies, but we have to have an honest partner,” he said.   

Bill Proposes Ombudsman to Protect Rhode Islanders With Developmental Disabilities

By Gina Macris

An independent ombudsman who would represent the safety, health and other interests of adults with developmental disabilities in Rhode Island has been proposed by state Rep. Eileen S. Naughton, (D-Warwick).

Naughton filed a bill that would establish the state government position following the death of Barbara A. Annis, 70, in February.  Annis suffered massive infection that developed after a fracture of a thigh bone went untreated for several days. 

 In the immediate aftermath of Annis’ death, the Rhode Island Developmental Disabilities Council called for legislation creating an independent advocacy office like the one Naughton’s bill would set up.

“We have a child advocate as well as an advocate for the elderly and the mentally ill, but none for the developmentally disabled,” Naughton said in a statement April 8. If enacted, the bill would establish the ombudsman’s office within the state Department of Administration.

“We’ve taken great strides in our efforts to make Rhode Island society more inclusive for the developmentally disabled. The next step is to have an independent advocate to ensure that the health, safety, welfare and rights of the developmentally disabled are more secure,” she said. The bill is 2016-H 8038.

Naughton’s proposal comes as the state’s attention has been focused on issues affecting persons with developmental disabilities in two ways:

• Hearings in U.S. District Court about the state’s compliance with a consent decree that would transform how Rhode Island provides inclusive employment and other services to persons with developmental disabilities.

• · Multiple investigations involving conditions at more than 200 group homes for persons with developmental disabilities following Annis’ death.

The state Attorney General’s Office and State Police launched criminal investigations as a result of Annis’ death Feb. 15 at Roger Williams Medical Center in Providence. Five staff members of the state-run group home where she lived have been placed on paid leave.

The home, College Park Apartments on Mount Pleasant Avenue in Providence, has been closed by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), and the remaining 14 residents have been moved elsewhere.

The Rhode Island Disability Law Center has opened an investigation into the welfare of Annis’ former housemates.

In addition, BHDDH, in cooperation with the state Department of Health, last month began unannounced inspections of 269 private and state-run group homes.

Judge Says RI General Assembly Shares Responsibility for Implementing Decree

By Gina Macris

Key elements of Rhode Island’s compliance with a federal consent decree aimed at correcting violations of the Americans with Disabilities Act depend on funding that has not yet materialized.

The funding issue surfaced repeatedly during day-long testimony April 8 before U.S. District Court Judge John J. McConnell, Jr. who is overseeing compliance with the consent decree, signed in April, 2014.

 Officials who took the witness stand referred often to two items in Governor Gina Raimondo’s proposed budget for the next fiscal year:  $5 million for wage increases to staff who provide direct care to the developmentally disabled and nearly $1.9 million for enhanced services to help a target group of about 75 people get jobs and gain access to non-work activities in their communities.

 Jennifer Wood, deputy secretary of the Executive Office of Health and Human Services, said, “My task is to ensure that when the legislature goes home in July, that budget is intact.”

To which McConnell responded:  “I hope the legislature understands it is equally as responsible as the Governor for compliance. The Court will take action against whoever in government fails to fund it,” he said.

Wood said she would be sure to convey the message.

On Tuesday April 12, the House Finance Committee is expected to hear the budget proposal for the agency principally responsible for implementing of the consent decree, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Nicole Kovite Zeitler, a lawyer for the Department of Justice, contested the assertion the state made in an April 1 status report that it is in “substantial compliance” with the consent decree. The decree resulted from DOJ’s investigation of sheltered workshops that employed people with developmental disabilities at sub-minimum wage.

Any increase in the number of people with developmental disabilities who have gotten jobs in the last two years has not been the result of any state efforts, Zeitler said.

Rather, “if people are working it’s because job coaches and families work really hard” to help them, Zeitler said.

“The system will be at a standstill until a rate redesign allows employers to actually pay direct service providers a living wage,” she told the judge.

A redesign of the reimbursement rates to private agencies is one of several compliance efforts that the state has in the planning stages, although those talks have been going on for nearly a year, according to A. Anthony Antosh, director of the Sherlock Center at Rhode Island College. The Sherlock Center provides technical assistance and guidance to BHDDH on implementing the consent decree.

None of the testimony in federal court on April 8 made it clear how much money it would cost to overhaul the current reimbursement rate system or whether Raimondo’s budget proposal to increase funding is enough to accommodate such a change.

Antosh, however, said that the state is spending about $15,000 for each person with a developmental disability who attends a segregated day program, about half what it costs for job coaching and other community-based services.

Zeitler noted that funding letters that go out to individuals with disabilities do not say anything about employment-related services. Rather the letters list other categories of services and the associated funding.

“They need to cash in their hours for day services to buy employment services,” Zeitler said.  Moreover, the rate for job-related services is twice as much as for day services, she said. 

“That’s why we need to move to a different system,” said Wood, the deputy secretary of the Executive Office of Health and Human Services.

Zeitler said that the consent decree requires individuals have meaningful options for community integration no later than their 18th birthdays.

Wood said “that is occurring, but sometimes there’s a delay in the handoff.”

McConnell, however, referred to a statement filed with the court by the Rhode Island Disability Law Center, which said clients had experienced delays in obtaining services up to a year after their 21st birthdays.

Wood said she was troubled by that statement, and had asked staff to follow up.

“I am not in any way saying that is acceptable,” she said.

She said it is not state policy to begin adult services at age 21, but “it takes time for practice to meet policy.” (State law says persons with developmental disabilities become eligible for adult services at age 18.)

Wood testified extensively about efforts at high-level interdepartmental coordination, especially when it came to generating data for the purposes of complying with the consent decree. In fact, Wood herself emailed the most recent set of figures to DOJ lawyers after midnight the night before the hearing.

Lawyers for the DOJ and Charles Moseley, the court monitor for the consent decree, have been pressing for an accurate census of the population covered by the consent decree as a pre-requisite for determining whether the state is meeting its compliance targets on a continuing basis.

At the end of the day, Zeitler and Moseley said they still need time to figure out whether the latest head count - about 400 more than the 3,000 reported last week - was accurate and unduplicated.

Wood said a chief problem in gathering the data was that young people and adults with developmental disabilities may receive services from one to three agencies that for decades have not shared confidential information with each other.

But in the past few months, Wood said, the Executive Office of Health and Human Services has coordinated a push to change that practice. “We are now one big happy data family,” she said.

Going forward, Zeitler said, the DOJ will be watching to see whether the state fulfills its promises, like having an improved reimbursement structure in place for private service providers by July 1. 

McConnell’s next review of the case is scheduled for May 2.

“For whatever it took,” McConnell told Zeitler, “it looks like you got people’s attention. I hope you don’t lose that, either in the short run or the long run,” he said.

Legislators Describe "Broken" System of Disability Services

By Gina Macris

For some individuals, there is a big gap between vision and reality under the terms of the federal consent decree that attempts to bring Rhode Island into compliance with the Americans With Disabilities Act.

Legislators described some of the real-life experiences during a session of the House Committee on Health, Education and Welfare (HEW), Thursday, April 7, at which two officials involved with the consent decree briefed lawmakers about progress of the court case.

State Rep. Dennis Canario, D-Portsmouth, said that one of his constituents used to have work through the James L. Maher Center, which is headquartered in Newport, but now he sits at home, doing nothing.

The man had been in a job where he interacted primarily with other people with disabilities, while the consent decree mandates that Rhode Island’s developmental disability system move toward community-based employment. Canario said, in effect, that the second part of the equation has not materialized for his constituent.

“I don’t understand the whole thing,” Canario said, “There are broken parts to it. People are becoming victims.”

A similar account was described by Rep. Joseph N. McLaughlin, D-Cumberland and Central Falls, who said one of his constituents is a man who uses a wheelchair and has had a total of 17 surgeries for a medical condition.

The man’s family has been notified that his state support would be cut off “because he wasn’t working,” McLaughlin said, adding, “Somebody screwed up somewhere.”

Charles Moseley, the federal court monitor on implementation of the consent decree, said there is a variance process for individuals for whom employment is not appropriate.

 Moseley also said he wants to hear from families and individuals who are having problems during the implementation of the consent decree. 

He and A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said a lack of funding is the chief cause of the problems experienced by individuals who depend on developmental disability services. 

Antosh, who provides technical expertise and guidance to implementation efforts, said a total of 20 percent was cut from the state’s developmental disability budget between 2009 and 20012.

Progressive practices that were commonplace in 2000 and 2001 were “deconstructed” as a result of the cumulative impact of funding reductions and led to the U.S. Department of Justice initiating an investigation into the state’s sheltered workshops, Antosh said.  That investigation resulted in the consent decree, signed in 2014.

An evidentiary hearing on the state’s compliance with the decree – which undoubtedly will touch on funding – is set to begin at 10 a.m. Friday, April 8,  in U.S. District Court before Judge John J. McConnell, Jr.

The HEW Committee Chairman, Joseph N. McNamara , D-Warwick, pointed to gaps in service when young people transition from school-based programs to adult services.

“The last few monthsof school are cruel and unusual punishment,” McNamara said. “It’s one of the saddest things that take place in our schools,” he said.

McNamara said the House recently passed a bill sponsored by Rep. Samuel A. Azzinaro, D-Westerly, Deputy House Majority Leader, that would require school districts to retain students with disabilities through the end of the academic year during which they celebrate their 21st birthday. The bill now needs support in the Senate, he said.

Canario, a committee member and the father of a child with a disability, said the service gap is a big issue.

“I couldn’t agree with you more,” Moseley said.

“Are you saying that exiting school without a transition plan is a violation of the Americans With Disabilities Act?” Canario asked.

Moseley paused, as if to choose his words. The consent decree has “specific requirements” for transition services that include a career development plan, beginning at age 14, he said.

McNamara said, “Transition planning is not taking place.”

He cited the case of a young man from Westerly who was “helping out” at the General Assembly on Wednesdays in a student vocational experience and was suddenly “thrown out of school.”

“He doesn’t understand why he can’t help out with all these activities” any more, McNamara said.

The system is broken, Canario said. “Too many kids – young adults – are turning 18 and their services are being dropped.”

“I’m not disagreeing with you,” said Moseley.

Allegations of Service Gaps, Lack of Job Supports, Challenge RI Compliance With Consent Decree

By Gina Macris 

this article has been updated

Rhode Island has not expanded job development services to people with developmental disabilities as required by a 2014 federal consent decree, according to a key professional at the Sherlock Center on Disabilities at Rhode Island College. 

Claire Rosenbaum, the adult services coordinator at the Sherlock Center, filed a statement in U.S. District Court April 6 that says the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) does not include job development as part of its standard package of services. Instead, the department expects them to shift money from other funding categories to do that.
 
Rosenbaum’s statement helps lay the groundwork for a challenge to a claim by the state that it is in “substantial compliance” with the decree.  Judge John J. McConnell, Jr. is to hear evidence in the case Friday, April 8 at 10 a.m. 
 
Separate statements about delays and inadequacies in services, particularly for young people eligible for transitional supports, were filed earlier this week by the Rhode Island Disability Law Center and by Tammy Russo, the mother of a 23-year-old man who receives BHDDH-funded services. 
 
Rosenbaum’s statement concurred that “one of the greatest problems is the gap in services experienced by many individuals with disabilities as they transition from youth services to adult services.”  
 
“I know individuals who have experienced a gap in disability services, spanning anywhere from a few weeks to a few months to a year or more,” she said.
 
Often, because many providers are refusing new cases, the only option is so-called “self-directed supports”, in which individuals or their families manage specific BHDDH allocations, organizing services and hiring their own direct service workers, Rosenbaum said.
 
Rosenbaum, who is widely respected in the developmental disability community, has an adult daughter who receives BHDDH-funded services, and her job puts her in touch with about 250 adults with disabilities and their families.
 
She said the lack of openings for new clients in the direct service system makes it difficult for individuals to get job development services. 
 
Unlike BHDDH, the Office of Rehabilitation Services of the state Department of Human Services provides funding to direct service agencies for job development services.  However, it pays a flat rate for each job placement, no matter how extensive the needs of the client. Consequently, the developers tend to work with less challenging candidates for employment,  Rosenbaum said.

Direct ORS employment services tend to be limited to job assessments which many clients find to be “excessive and not beneficial to finding employment,” she said.

In another statement filed with the court, Anne M. Mulready, supervising attorney of the Disability Law Center, said Rhode Island law makes youth with disabilities eligible for adult services once they reach 18, but clients say BHDDH does not process their applications until they approach the age of 21.

Mulready currently represents two 19 year-old clients with complex needs whose families each have been waiting about a year for word on eligibility from BHDDH.

“It will take a significant amount of time to plan for and locate appropriate services for these clients,” she said. “Although they are currently in school, BHDDH participation in planning and coordination needs to be occurring now, so that these individuals will not experience gaps in services when they exit high school,” she said in the statement.

In her statement, Russo said she waited two years for BHDDH to find her son, Joey, eligible for services. She searched for five months to find a service provider, because seven of the ten she contacted were not accepting new clients.

Then, BHDDH delayed the start of services until a month after her son’s 21st birthday, which was Jan. 20, 2014, Russo said.  

Because her son’s agency was unable to organize a program of community-based supports for Joey, Russo did it herself, putting together a schedule that included exercise at the YMCA, education at the library with workbooks and supplies she provided, as well as bowling and volunteer experiences she arranged through people who knew Joey at school or in the community.

In effect, Russo served as the architect of the “person-centered planning” now required under terms of the consent decree. She said support staff have told her that their employer used the plan she organized for Joey as a model for helping other clients.

Rosenbaum, meanwhile, said that another “persistent problem” is inaccurate assessments of individuals’ needs and correspondingly inadequate allocations of funding.
 
“I know individuals who have had their (funding) lowered following a reassessment,” she said, despite the fact that the answers were very similar to the original assessment.
 
“Furthermore, I have heard complaints that some interviewers are not recording the respondents’ answers as given and/or are challenging those responses” during the assessment interviews, Rosenbaum said.  

Court to Hear Evidence Friday on RI Compliance with Olmstead Decree

By Gina Macris

The state of Rhode Island says it is in “substantial compliance” with a 2014 consent decree  mandating a decade-long transformation of services for people with developmental disabilities to conform with the Americans With Disabilities Act.

That assertion, made in a compliance report filed April 1 in U.S. District Court, will face close scrutiny in an evidentiary hearing scheduled for April 8 before Judge John J. McConnell, Jr.

The judge also has in hand a recent report from the court monitor in the case, Charles Moseley, that expresses doubts about the state’s ability to meet employment targets in the decree or sustain them over time. The decree remains in effect until Jan 1, 2024.

Other filings submitted this week say the state developmental disabilities agency delays services until young people reach the age of 21 – or later – in violation of state law.

One of the statements also says there is a dearth of job development services available to individuals with disabilities, because the state does not fund these supports. Instead, the state expects service providers to shift money from other funding categories to pay for job development.

In a joint motion filed March 1, Moseley and lawyers for both the state and the U.S. Department of Justice identified three issues that could stand in the way of full compliance: a lack funding, too few placements in community-based employment and other integrated activities, and insufficient leadership necessary to fulfill the requirements of the consent decree.

A month later, the state’s report says it has:  

•   Put the necessary interdepartmental leadership in place, at an annual cost of $591,244.

•   Exceeded current targets for supported employment.

•  Has remained “fully committed to providing sufficient funding to effectuate the goals and targets in the consent decree.” The report cites millions of dollars spent since 2014 and proposed by Governor Raimondo in budgets submitted for General Assembly approval for the remainder of this fiscal year and for the next year.

The state identified more than 3,000 adults in segregated programs and secondary-school special education students who are currently covered by the decree.

In terms of employment goals, the decree requires relatively modest targets, starting with perhaps 150 new jobs a year, depending on how many of the job seekers are eligible high school students in a particular graduating class.

At its heart, the agreement requires the state to fundamentally transform its approach to daytime services for adults with developmental disabilities, and to show exactly where it is putting its money. Most of the population affected by the consent decree has worked in sheltered workshops or stayed in segregated day programs in violation of the 1999 Olmstead decision of the U.S. Supreme Court, which affirmed the right of people with disabilities live and work in their communities under Title II of the ADA.  

Among the key budget items the state cited in its April 1 report is a proposed $5 million increase for the wages of private agency staff during the next fiscal year; it would hike workers’ pay by about 45 cents an hour.

The “Enhanced Payments Direct Care Staff” would provide financial incentives to providers who commit to achieve targets for placing people with developmental disabilities in jobs according to timelines that satisfy the consent decree, according to the state’s report. 

The labor force working directly with people who have intellectual challenges makes an average of about $11.55 an hour, according to a spokeswoman for the Community Provider Network of Rhode Island, which represents 23 private agencies that provide most of the services in Rhode Island.

Agencies operate at a loss for each worker they employ, because the state does not reimburse them for the full cost of employer-related taxes and other benefits, according to the spokeswoman, Donna Martin, who was interviewed about Governor Gina Raimondo’s budget proposal in February.  The $5 million proposal does not contain a provision for employer-related costs.

DD System Under Financial Strain

BHDDH director Maria Montanaro, meanwhile, has acknowledged that past cuts in reimbursement rates have left the private provider system “fragile,” according to a Providence Journal report on her testimony before the House Finance Committee in early January. 

Providers report that the cuts have forced them to reduce wages, resulting in lower quality applicants and high turnover.

In a court order spelling out the parameters for the April 1 report, McConnell asked for evidence that the state is implementing performance-based contracts for community services, in conjunction with a “flexible reimbursement model” that includes incentives to service providers for placing clients in jobs. 

The state’s report does not mention a flexible reimbursement model.

The consent decree requires that the state “ensure that its reimbursement model for day activity services is sufficiently flexible to allow providers to be reimbursed for costs” directly related to supporting integrated employment, including those that are carried out “when service provider staff is not face-to-face with a client.”

The decree goes so far as to cite specific reimbursable activities, including negotiating with employers and counseling clients by telephone, which are not covered by the current system.

Currently, BHDDH reimburses private agencies for daytime services according to the amount of time each worker spends with a client. The time must be documented for each client and worker in 15-minute increments. Agencies are not reimbursed when clients are absent, for whatever reason. Unless a client has 100 percent attendance, the agency cannot collect the full amount of funding that BHDDH authorizes for each person on an annual basis.

In response to McConnell’s request for information on performance-based contracts, the state’s report says those are still in the planning stages in all agencies governed by the state’s Executive Office of Human Services, including BHDDH. The report indicated BHDDH would have performance-based contracts in place with service providers during the next fiscal year.  The consent decree says performance-based contracts were to have implemented by Jan. 1, 2015.

Consent Decree Requires its Own Budget

The 2014 agreement between the state and the Justice Department requires that the state maintain a budget that can track the amount spent on consent decree compliance that is distinct from general expenditures on behalf of adults and adolescents with developmental disabilities.

Besides the planned $5 million in wage increases, the state’s compliance report cites another $1,870,474 in enhanced services targeted for a total of 75 individuals who would move to supported employment from a sheltered workshop or a segregated day program during the next fiscal year.

McConnell had asked the state for individualized funding information and other information that “follows the person” as each of the individuals under the jurisdiction of the consent decree makes the transition from a sheltered workshop to community-based employment or integrated day services.

So that the court, the monitor, and lawyers for both sides can track specific individuals’ progress over time while protecting their privacy, McConnell said that each person should be identified by a letter code that blocks personally identifiable information.

The state did not submit any information that could be tracked on an individual level, but its report says that it has contracted with the Sherlock Center on Disabilities at Rhode Island College to reconfigure an existing “Employment and Day Supports Survey” to accomplish that goal.

Beginning in June, the Sherlock Center will conduct the survey quarterly, providing all the requested data and enabling “ongoing measurement of targets related to the consent decree at the individual level,” according to the report.

BHDDH already has a $675,000 contract with the Sherlock Center to provide technical expertise and guidance to private agencies converting from segregated programs to community-based day services in a so-called “Conversion Institute” required by the consent decree. Governor Raimondo would keep that level of funding for the Conversion Institute in her budget proposal for the next fiscal year.

The state is “working systematically” with Sherlock Center on the Conversion Institute, as well as with direct support agencies, “to entirely transform the delivery system” for supported employment and integrated day services in Rhode Island, according to the report.

The state’s report identifies a total of 3,076 individuals with intellectual or developmental disabilities under the purview of the consent decree, including 99 who left high school in the 2013-2014 and 2014-2015 academic years.

The consent decree requires integrated employment for 75 adults formerly in sheltered workshops or segregated day programs by Jan. 1, 2016, and the state ’s report counted 101 who had met that goal.

Another of the decree’s requirements is that all of the 99 students who left high school in the past two years were to have jobs by July 1, 2015, but as of April 1, the state had identified 37 in that category who have work.  

Moseley, the monitor, told the judge in his most recent report report that his conversations with private providers and with BHDDH staff indicate that the agencies are not receiving any extra support to place people in jobs and may not be able to keep up the current pace.

Other Consent Decree-Related Funding

The state’s April 1 submission enumerates other consent decree expenditures, from July 1, 2014 through the end of the next fiscal year, June 30, 2017, at the three agencies responsible for implementation: BHDDH, the Rhode Island Department of Education (RIDE) and the Office of Rehabilitation Services of the Department of Human Services (ORS.)

The categories and amounts are:

• $800,000 in each of the current and previous fiscal years for a consent decree “trust fund” to help direct service agencies with start-up costs for converting from sheltered workshop operations and segregated day programs to community-based supports.

• $244,260 to the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and its State Employment Leadership Network (SELN) for guidance and technical assistance in transforming the state’s system of services. The SELN is a partnership between the NASDDS and Institute of Community Inclusion at the University of Massachusetts Boston.

• ·A tripling of the ORS budget for services to individuals with developmental disabilities, from $884,370 in the first fiscal year of the consent decree (July 1, 2014 to June 30, 2015)  to a projected $2,603,374 in the next fiscal year.

•  More than $300,000 a year, through the next fiscal year, budgeted by RIDE for personnel and contracts to help implement the consent decree, in addition to supports provided by individual school districts to transition-aged special education students.

• A total of $591,244 for new leadership positions focused on implementation of the consent decree: a consent decree coordinator, a chief transformation specialist, an employment specialist and a program development director.

Moving to Fill Leadership Gap

The most critical of the posts is that of the consent decree coordinator, Mary Madden, whose position gives her authority to bring about cooperation among BHDDH, ORS, and RIDE in implementing the consent decree, according to the report.

As recently as December, Moseley and lawyers for the DOJ had expressed concerns that the coordinator’s position, subordinate to BHDDH director Montanaro, did not have enough clout and that leadership was foundering. 

Since then, Madden has been appointed as the coordinator on a permanent basis and reports directly to the Secretary of the Executive Office of Health and Human Services, Elizabeth Roberts, “with the full authority of the Secretary and the Governor,” according to the report.

“The Secretary of Health and Human Services, the deputy secretaries and each of the directors of the state agencies are personally involved in monitoring consent decree implementation” and are briefed regularly by Madden and by their representatives on an “Interagency Consent Decree Team,” the report said.

Attorney General Identifies Group Home Resident Whose Death Prompted Investigations

Rhode Island Attorney General Peter F. Kilmartin has named Barbara A. Annis as the 70 year-old woman whose Feb. 15 death has triggered criminal investigations and unannounced inspections of hundreds of group homes for persons with developmental disabilities. 

Kilmartin’s spokeswoman released Annis’ name April 1, but gave no additional information, according to the Providence Journal. 

Annis lived in the now-closed College Park Apartments at 612 Mount Pleasant Avenue, Providence, a state-run facility built to accommodate patients who have chronic medical conditions as well as intellectual or developmental challenges. 

She was admitted to Roger Williams Hospital Feb. 9 for what the College Park staff reported as a bad bruise, but which the hospital found to be a broken thigh bone that had become infected. After she responded to initial treatment, she was transferred to a nursing home, according to an official of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  But her condition soon worsened and she was readmitted to the hospital, where she died. 

There have been a total of six allegations of abuse or mistreatment at College Park since January, 2015, including an incident that occurred after Annis died. The State Police and the Attorney General’s Medicaid Fraud and Patient Abuse Unit have begun criminal investigations, and 5 of 27 state employees who worked at College Park were placed on paid leave. 

In addition, surprise inspections have begun of all licensed group homes in the state, about 278 private and state-run facilities, according to a spokesman for Elizabeth Roberts, Secretary of Rhode Island’s Executive Office of Health and Human Services. Nine of the 278 homes are vacant. 

Residents who remained at College Park – a total of 14 people – all have been moved, according to BHDDH, which ran the home. The Rhode Island Disability Law Center has opened an investigation into the welfare of those people.   

After College Park closed March 25, Roberts said, “I remain outraged by the alleged incidents at the College Park Apartments group home.” 

"Mythbusters" Have Fun Delivering Facts About Consent Decree to Audience of Peers

Natalie Bacon, left, and Meghan O'Leary, right, singing "I'm the Boss of Me," with original lyrics set to the tune Folsom Prison by Johnny Cash. In the background, Christopher Pawlyk plays the guitar. 

By Gina Macris

About a dozen adults with developmental disabilities and their helpers combined hard facts and fun as self-styled “Mythbusters” Monday, March 28 to counter rumors and half-truths about the complicated federal consent decree that demands they - and thousands of others - be more fully integrated into their Rhode Island communities.  

The narrated show, put on by the current leadership class of Advocates in Action, played at the Crowne Plaza in Warwick before a crowd of about 200 people, many of whom receive state services, just like some of the presenters. Family members, support staff, and friends also attended.  

The spring statewide meeting, an annual event, offered the students a chance to practice emerging skills in advocating for themselves and others as they wove together videos, music, and live speaking parts. The leadership class, which concludes in June, offers a 10-month learning experience for Rhode islanders with developmental disabilities every year. 

The first myth on the agenda, as explained by Amy Ethier, was that “Department of Justice came to Rhode Island and said that everyone who has a dd (developmental disability) has to work. If we don’t work, we’ll lose our services.”  

That statement is not true, said Andrew Whalen, who works part-time at Advocates in Action.     

According to the consent decree, “those people who want to work will get the support they need to work” in jobs paying at least minimum wage, he said. “People can choose not to work, but it needs to be an informed decision.”  

To make the point that life experience is at the heart of an informed decision, Deb Kney, the administrative director of Advocates in Action, presented  a take-off on the long-running Life cereal television commercial, in which three-year-old “Mikey” finally tries the food that is “supposed to be good for you” after his two friends refuse to take a bite.    

courtesy advocates in action

In the video, Keith Wilcox takes on the role of “Mikey,” who is flanked by friends egging him on to eat the cereal. The final message, delivered poster-style on a mock cereal box: ” Real Life Tastes Great! Sample Some Today!”  

Though it was emphasized during the presentation, the state does not now have enough resources in place to readily help everyone with a developmental disability who wants to get a job, or to immediately offer real life experiences to everyone who needs to make an informed decision about applying from a waiver from work.  

The way the state will pay for implementing the consent decree is one of the key issues that has been unfolding since January in hearings in U.S. District Court in Providence.  

Another thing the court wants to see is an assurance that services will fit an individual’s needs.  

It’s not one-size-fits-all, the leadership class impressed upon its audience.  

Those receiving services, according to the consent decree, are entitled to an individualized service plan that places each person’s needs, strengths and interests at the heart of planning and delivering services.   

Jim Petrone, who uses a motorized wheelchair and a communication device, demonstrated that point in a pre-recorded video which shows him listening for a minute while several people talk about his likes rather than asking him directly. Then Petrone conspicuously turns up the volume on his communication board and a deep voice booms: “Attention! Excuse me. This is my meeting and I need to talk now.”   

courtesy advocates in action

At the other extreme,  a video clip dispelled the myth that the mandate for individualized supports includes luxuries. Christopher Pawlyk donned a lei, oversized sunglasses and a flower-topped hat trimmed with halo of fake fur to deliver this line: “Well, this person wants to take an individual vacation to Hawaii two to three times a year.”

Medicaid does not pay for “stuff,” but for the supports and services needed for people to have access to experiences in their communities, the leadership class emphasized.  

The group also busted the myth that Rhode Island is closing all its group homes AND moving everyone into shared living arrangements with individual families.  

Class member Amanda Campbell followed up with the facts. “It is true that the state wants you to become more educated and informed on shared living, but it’s your choice. You have the right to live where you want to live,” she said.  

Advocates In Action invited an expert on shared living, Joanne Malise, to speak on that housing option. She described it as a “mutual choice” involving a family and the individual looking for a place to live.  

“You get to know each other and both people decide to live together,” she said. Malise is director of Living Innovations, an agency that specializes in supporting shared living arrangements.  

For those seeking a different option, financial realities make house-hunting a bit more complicated. Questions from the audience indicated people with developmental disabilities are having a difficult time securing subsidized apartments for which they are eligible.  

People living in group homes who may not be candidates for shared living arrangements may have to move anyway if their home is closed during the state’s shift to shared living.  

Charles Williams, director of Social Services for the Division of Disabilities in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said the group homes must give residents 30-days’ notice before a house closes. The agency is obligated to continue to provide support until alternate housing is found, he said.   

While people with developmental disabilities have the right to choose the agency which serves them, the state does not reimburse them for all their costs. That issue is also embedded in the federal court case. Financial constraints have prompted the state’s private providers to refuse new clients, particularly if the individuals have extensive, costly needs. 

Unannounced Group Home Inspections Begin in Rhode Island

By Gina Macris

Unannounced inspections of Rhode Island group homes for adults with developmental disabilities began Monday March 28 in the wake of the recent death of a woman who lived in the College Park Apartments in Providence, according to a spokesman for the Executive Office of Health and Human Services.

College Park closed March 25, the day after the last of the 14 people still living in the apartments were moved to new housing. Since the beginning of 2015, College Park had been the subject of a total of six complaints of patient abuse or mistreatment, according to a spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). 

In addition to criminal investigations underway by the State Police and the Attorney General’s Office,  Elizabeth Roberts, the Executive Secretary of Health and Human Services, has ordered a “comprehensive review” of all licensed group homes in Rhode Island whether they are privately owned or run by the state, according to her spokesman, Michael Raia. He clarified previous indications from BHDDH that the inspections were to target only state-run group homes.

Raia said March 29 that Roberts had asked BHDDH Director Maria Montanaro and Department of Health Director Nicole Alexander-Scott to work together on the review, starting with inspections of the homes with the “highest risk assessment.” 

Inspectors and investigators from both the health department and BHDDH are working as a team on the inspections, which are being prioritized according to “incident reports and complaints for a set period of time,” Raia said. He could not immediately elaborate on the time period in question, although he said the initial round of inspections includes both private and state-operated facilities.  

Updating previously available statistics, Raia said there are 27 licensed state-run group homes, excluding College Park, and 251 licensed homes owned by private agencies.

Nine of the privately-run group homes are vacant, leaving 242 homes that house a total of 1,162 people as of Feb. 29, he said.  Raia said 156 individuals live in state-run group homes, and 284 people are with families in shared living arrangements.   

DD Agency Faces Scrutiny From RI Law Enforcement, Governor and Federal Court

By Gina Macris

With criminal investigations underway into the death of a woman with developmental disabilities in its care, the Rhode IslandDepartment of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) is gearing up for an important deadline on another front.

April 1 is the date by which BHDDH must submit a court-ordered fiscal plan for complying with a 2014 consent decree that enables people with developmental disabilities to get jobs and enjoy other  activities in their communities as required by the Americans With Disabilities Act. Judge John J. McConnell, Jr. has scheduled an evidentiary hearing on the state’s plan for April 8 in U.S. District Court, Providence.

The federal monitor in the case has expressed doubts that the state will be able to rearrange its budget in the next year to make the needed changes.

The Rhode Island consent decree, the first of its kind in the nation, also has received high-level attention from the U.S. Department of Justice in Washington. On Friday, March 18, the Acting Assistant Attorney General for the Civil Rights Division, Vanita Gupta, met with Governor Gina Raimondo to discuss the consent decree.

Coincidentally, the meeting occurred the same day that state human services officials announcedthe death of a 70 year-old woman with developmental disabilities, who had succumbed to a massive infection as a result of a leg fracture that had gone untreated for several days at the College Park Apartments group home on Mount Pleasant Avenue, Providence. Her death on Feb. 15 is under investigation by the Attorney General and the State Police.

The Attorney General’s Office is conducting a total of three investigations in connection with College Park, according to spokeswoman Amy Kempe. She declined to elaborate.

 Including the woman’s death, there have been a total of six incidents of patient abuse at College Park since January, 2015, according to a BHDDH spokeswoman.

 The remaining 14 College Park residents all had been moved elsewhere by the end of the day Thursday, March 24, and the state-owned facility closed March 25, according to Michael Raia, communications director for the Executive Office of Health and Human Services.

He said Governor Raimondo gets regular updates on the investigations related to College Park and is “very focused” on reviewing those findings and receiving an assessment of any systemic problems that health and human services officials may identify.

The Executive Secretary of Health and Human Services Secretary, Elizabeth Roberts, has ordered spot-checks of state-rungroup homes beginning next week, Raia said on Friday , March 25. These checks are to be cooperative efforts between the Department of Health and BHDDH, which currently only has two investigators in Quality Assurance/Quality Improvement.

Raia described the meeting between the Governor and the DOJ’s civil rights chief as a “courtesy call.”

The DOJ requested the meeting, Raia said. The two discussed the state’s appointment of a Consent Decree Coordinator, funding, and the collection of data, he said.

“The meeting was an opportunity for the Governor to listen to the U.S. Department of Justice’s thoughts, opinions and concerns,” Raia said.

The court monitor in the case, Charles Moseley, expressed his concerns in a report to Judge John J. McConnell, Jr. that was made part of the court file on March 18.

The report that the state must turn into the Judge by April 1 is to contain evidence that there is a defined consent decree budget, including a per-person allocation based on the actual costs of implementing community-based activities required by the consent decree.

Moseley, however, said he is concerned the state will not be able to free up enough money in the next year or so to satisfy the consent decree.

According to Raimondo’s budget, the bulk of the funding for mandated services would come from moving a total of 500 people with disabilities, 38 percent of Rhode Island’s entire group home population, into less costly “shared living arrangements” with families by June 30, 2017. 

In the past ten years, a total of 267 people have gone into shared living.

The shift of 500 people would realize a total of $15.5 million in savings by June 30, 2017, but Moseley said he is worried that those targets are “too optimistic” and that BHDDH will not be able to achieve them in a little more than a year’s time.

Moseley also wrote that he is concerned BHDDH will not be able to clearly identify a per-person cost as a foundation for projecting the budget needed to help people obtain supported employment and access to community-based activities.

The state now pays below-cost rates to more than 20 private agencies providing most of the services to more than 3,600 Rhode Islanders with developmental disabilities. The agencies either operate at a loss or depend on outside grants as well as income from programs not dependent on BHDDH funding.

“Although the state has not yet provided the needed financial data, it should be noted that it is, reportedly, meeting consent decree placement targets” for supported employment, Moseley said.

“This must be confirmed, however. From my discussions with providers and state BHDDH staff it appears that these placements are being funded by providers through existing resources, and, as such, may not be sustainable over time. I will be tracking this in the months to come.” 

Moseley noted several positive developments, including staff appointments within state government that he expects will aid implementation of the consent decree.  Among the new positions is the Consent Decree Coordinator, Mary Madden. The full scope of her authority is not yet clear, and Moseley said he has requested a copy of her job description.

In the two years the consent decree has been in effect, both the DOJ and the monitor have cited a lack of interdepartmental leadership and coordination as one of their primary concerns. They have sought appointment of a high-ranking state coordinator who has the authority over n BHDDH and two other agencies responsible for some portion of the reforms, the Rhode Island Department of Education (RIDE) and the Office of Rehabilitation Services of the Department of Human Services (ORS).  

In other developments noted by Moseley, BHDDH has:

• Hired a Chief Transformation Officer. Andrew McQuaide previously served as consent decree coordinator within BHDDH, but he did not have authority outside that agency.

• Advertised for a supported employment coordinator to work with private service providers

• Received approval to hire a chief operations officer and quality improvement coordinator.

“These positions are important to provide leadership and guidance over the systems changes that need to take place,” Moseley said.

Raia said the quality improvement coordinator’s post has been advertised and applications are being accepted.

The new positions, funded in the Governor’s budget for the next fiscal year, reflect the fact that she is “committed to achieving the reforms outlined in the consent decree,” Raia said. He also cited a $2 million increase in funding for community-based daytime activities and an additional $5 million that would provide a raise of 45 cents an hour to staff of private agencies who work directly with people with disabilities. Model progams showcasing community-based services would receive a $1.9 million boost.  

Moseley said BHDDH, RIDE, and ORS are working together on implementing a quality improvement plan in keeping with the consent decree requirements.

Moseley concluded that “the Court’s close oversight over the state’s progress on meeting the terms and conditions of the consent decree is having a very positive impact on both the quality and the pace of change in the state.”  McConnell began holding status conferences on the case in January.

RI Found Six Cases of Abuse Cases Before Moving to Close Group Home In Providence

College Park Apartments at 612 Mount Pleasant Ave., Providence, is to close by March 25.

By Gina Macris

The recent death of a 70-year old resident of the College Park Apartments in Providence was one of six incidents of patient abuse reported at the same state-run group home for people with developmental disabilities since January, 2015, according to the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.) 

On Monday, March 21, a department spokeswoman declined to answer questions about the nature of each investigation or shed light on four “corrective action plans” put into place in 2015 in an effort to halt the abuse. Two more allegations of abuse were reported this year, including the death of the unidentified woman Feb. 15.  

Spokeswoman Linda Reilly cited confidentiality concerns – even when declining to release statistics about the number of investigations handled by the BHDDH Quality Assurance/Quality Improvement unit. 

Reilly did confirm unrelated allegations of patient mistreatment at Zambarano Hospital in Burrillville, where two state employees have been put on paid leave. 

Five of 27 staff members at College Park Apartments are also on paid leave, she said.  Criminal investigations are underway at both locations. 

 Reilly was asked why BHDDH decided to close the College Park group home for people with developmental disabilities rather than changing the staff. The department is under a federal court order to put the needs and wishes of people with developmental disabilities at the heart of all long-range plans devised for their benefit.  So-called person-centered planning is one of the central provisions of a 2014 consent decree aimed at giving people with disabilities  opportunities for integrated work and leisure activities in their communities. 

Reilly said each of the 14 residents atCollege Park indicated a desire to move rather than stay at the facility. The family members and guardians of the residents reviewed the individual plans for their loved ones, Reilly said. 

Reilly did not elaborate on reasons for closing the home, except to say that the BHDDH director, Maria Montanaro, called on an outside agency to investigate “in order to corroborate the decision to close College Park.” 

That agency, Day One, “completely agreed that the house should close,” Reilly said. 

Day One was consulted after the 70 year-old College Park resident died at Roger Williams Medical Center and another resident of the same home subsequently was found to have “unexplained injuries” March 8, Reilly said. The dead patient had a fracture of the thigh bone that had not been treated promptly and became infected. 

Day One was consulted because of its expertise in dealing with people with limited verbal ability, Reilly said. The agency is better known for its expertise in sexual abuse and domestic violence, although there were no allegations of sexual abuse at College Park Apartments, Reilly has said.

Budgetary considerations had nothing to do with the decision to close the home, Reilly said. All residents are to be moved by Friday, March 25. 

Governor Gina Raimondo’s budget would cut an overall $15.5 million in non-salary operating expenses for 23 state-run group homes, about 46 percent of the current budget of $33.2 million, in the next fiscal year to help make money available to help fund the 2014 consent decree mandating integration. 

Reilly also clarified previous comments  by Health and Human Services Secretary Elizabeth Roberts about “targeted investigations” of group homes for people with developmental disabilities to be made by BHDDH and Department of Health officials. 

Reilly said the term referred to “spot checks” to be made of the 23 homes run by BHDDH itself through the Rhode Island Community Living and Supports  (RICLAS) unit of the division of developmental disabilities, “because we will not tolerate any neglect or mistreatment of people in our care.” 

RICLAS houses 210 of of a total of about 1300 with developmental disabilities who live in group homes in Rhode Island. The other people live in homes run by private service agencies that are not part of Roberts’ “targeted” spot checks.