$2.5 M Unused For Lack of RI DD Jobs Program

CVS Trainee - File Photo

By Gina Macris

This article was updated Sept. 10.

A total of $2.5 million dedicated to helping adults with developmental disabilities find new jobs remains unused because the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) hasn’t yet decided on a program for spending the money..

 A department spokesman has clarified an earlier statement about the amount of money lacking a spending program.

In addition, the Division of Developmental Disabilities (DDD) is still seeking a replacement for the chief employment administrator, who left May 1.

The lack of readily available BHDDH funding dedicated to expanding the number of job placements was disclosed by the Director of Developmental Disabilities at a virtual public forum in August.

The situation represents one factor threatening the promise of a 2014 federal court consent decree to change the lives of people who once spent their days in sheltered workshops or day centers cut off from the rest of the community.

A parallel issue at the top of the list of concerns of an independent monitor is a shortage of skilled workers who assist people with disabilities to find meaningful jobs and expand their activities in the wider community.

The workforce shortage has taken on heightened urgency since the monitor recommended last week that the U.S. District Court accelerate recruitment of workers and possibly impose multi-million dollar fines against the state for noncompliance of the consent decree. (See related article.)

Until a new DDD employment program is adopted, adults with developmental disabilities must either seek state-sponsored employment services funded outside BHDDH or reduce other types of BHDDH service hours to pay for help finding a job.

Limitations on employment supports built into the current developmental disabilities system are part of a comprehensive review now underway of reimbursement rates for private service providers and administrative barriers to integrated services,

The 2014 consent decree anticipated that by 2022 – eight years later – Rhode Island would be scaling up pilot programs of supported employment that would reach some 4,000 people.

But BHDDH has never scaled up. Its first pilot program emphasizing individualized employment supports began in 2016 and underwent several iterations until the final version, the “Person-Centered Employment Performance Program 3.0” ended June 30.

The DDD director announced in February that the program would not be renewed but did not explain the reasons.

At the same time, the director, Kevin Savage, hinted at frustration on the part of the chef administrator for employment services, Tracey Cunningham, saying that she would be “leading the charge” in designing a new supported employment program “if Tracey stays with us, and puts up with us longer.”

But Cunningham, Associate Director for Employment Services since 2016, announced her departure in early April. BHDDH has posted the position twice but has not yet found a replacement for Cunningham.

The BHDDH spokesman could not say why a new supported employment program has not yet been put in place but said the “the DD team is meeting with stakeholders to determine a spending and engagement plan.”

Job Placements Fall Short

In an August 29 report to Chief Judge John J. McConnell, Jr., the independent monitor, A. Anthony Antosh, documented the state’s limited capacity to serve adults with developmental disabilities.

For example, 23 of 31 agencies serving people with developmental disabilities said in a survey they had to turn away clients or stop taking referrals between July and December of 2021 because they did not have the staff to provide services,

By July, 2022, the state had found jobs for only 67 percent of the consumers that it had promised in the consent decree – 981 of 1,457. (The new-job totals span the entire term of the consent decree, whether or not a particular individual is currently working.)

Antosh said that job placement numbers have remained flat throughout 2021 and 2022, increasing by only 17 in a 12-month period.

In general, he described the developmental disabilities system as being in the “messy middle,” borrowing a phrase from Michael Smull, a developmental disabilities expert on system change.

Antosh said elements of the system desired in the future have been defined, and some individuals are beginning to see progress. But he said most still face the restrictions of the current system, “which needs to be funded and maintained while the future is being built.”

Funding will depend on the results of the ongoing program review that is now underway and how the recommendations will be received by the governor and the General Assembly.

Rate Review To Finish Nov. 1

Under court order, BHDDH moved forward with the comprehensive review, hiring Health Management Associates, the parent company of Burns and Associates, earlier this year. Burns and Associates helped the state a decade ago to implement the current system, which the DOJ found violated the Integration Mandate of the Americans With Disabilities Act. (Burns & Associates says the state did not implement its recommendations for that program.)

The DD director, Kevin Savage, said the review will be completed Nov. 1, a month earlier than expected. He told a public forum in August that he plans to schedule another public meeting shortly after the review is completed to gather feedback from the community before the BHDDH budget goes to the Governor, who must present a proposal to the General Assembly in January.

The review is expected to address not only funding issues but controversial administrative features that the monitor says are barriers to a community-based network of services, starting with the eligibility process.

For a decade, BHDDH has used the standardized Supports Intensity Scale (SIS), a lengthy interview process, to determine the intensity of a person’s disability and assign one of five funding levels for services.

Antosh has pushed back against the state’s stated intention to continue using the SIS, saying it needs yet comprehensive review. Despite the re-training of interviewers in 2016, families still report the SIS does not result in the funding necessary for needed services. And they have complained for years that they sometimes felt humiliated and emotionally drained by the SIS interviews.

The state has developed a supplemental questionnaire intended to improve the accuracy of the SIS, but Antosh said very few families report that they have seen it or understand its purpose.

The families of young people applying for adult services for the first time “continue to report being overwhelmed” by the process, which the state has promised to streamline. And families also generally don’t understand how to appeal a funding decision they believe is inadequate for the services their loved one needs, Antosh said. He recommended that intensive training of social caseworkers continue about communicating new policies to families.

Administrative Barriers To Integration

Antosh’s report also outlined the concerns of service providers about some features of the reimbursement rules, including:

• A requirement that they document the time each daytime worker spends with each client in 15-minute increments, a time-consuming and costly process.

• Another rule that dictates staffing ratios for different kinds of activities, which sometimes results in results in group activities in the community instead of individualized experiences.

Antosh reiterated recommendations of a workgroup on administrative barriers that said:

• The ratios should be replaced with reimbursement rates which allow workers to have 1,2, or 3 clients in their care

• Documentation of worker time should be done in three or four-hour units

Antosh said he expects the reviewers will reach conclusions that are similar to the workgroup. He made numerous other detailed recommendations in the 50-page report.

With the consent decree set to expire in 22 months, on June 30, 2024, Antosh said that all of his recommendations must be “fully implemented with urgency,” using boldface for emphasis.

All the state’s reforms eventually must be approved by the Court.

Read the monitor’s August 29 report here.

Read the monitor’s Sept. 1 addendum here.

RI DD Employment Chief To Join AccessPoint RI

By Gina Macris

Tracey Cunningham, a key figure in Rhode Island’s employment efforts for adults with developmental disabilities, will leave state service to become head AccessPoint RI, a private non-profit provider of services to children and adults with intellectual and developmental (IDD) challenges.

pHOTO ribhddh

She will succeed longtime CEO Tom Kane on May 2, according to an open letter on the agency’s website from the chairwoman of the AccessPoint Board of Directors.

Cunningham’s departure from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) comes at a critical time in the implementation of a 2014 civil rights consent decree, which emphasizes “employment first” for adults with developmental disabilities.

With a 2024 deadline looming for full implementation, Rhode Island faces a severe shortage of the workers needed to meet the employment goals spelled out in the consent decree. To reach full compliance, the U.S. District Court judge overseeing the consent decree has ordered the state to overhaul the entire service system for adults with intellectual and developmental disabilities.

Cunningham’s boss hinted earlier this year that she might be leaving BHDDH.

At a virtual public forum Feb. 9, Kevin Savage, Director of the Division of Developmental Disabilities, said Cunningham would be “leading the charge” in implementing any new supported employment program in the next fiscal year “if Tracey stays with us, and puts up with us longer.”

Savage was responding to a viewer’s question about the future of supported employment services at BHDDH. The third version of a Person Centered Supported Employment Performance Program (PCSEPP) expires June 30.

Savage said that program probably will not be renewed but funding for supported employment services will continue.

Last week, a BHDDH spokesman said of Cunningham: “We greatly appreciate her work to improve employment options for adults with intellectual and/or developmental disabilities. She will be missed, and we wish her the best in her new position.”

Cunningham has served as Associate Director for Employment Services in the Division of Developmental Disabilities since July 2016, according to her LinkedIn page. The post was created in response to the demands of the consent decree.

Elissa O’Brien, chairwoman of the AccessPoint Board, said Cunningham has more than 30 years’ experience in the field of intellectual and developmental disabilities, as well as two masters’ degrees, one in rehabilitation counseling and the other in strategic management and innovation.

AccessPoint has “lots to be thankful for” as Cunningham takes the reins from Kane, O’Brien said. “Under his leadership, the organization has grown and now services close to 1,000 children and adults annually. We are forever grateful to Tom for his hard work and dedication to our organization and to individuals living with IDD,” she said.

With April 9 marking the start of the eighth year of consent decree implementation, BHDDH could not say who might succeed Cunningham or describe specific plans for supported employment services in the next fiscal year, just three months away. A spokesman said only that “BHDDH will work with the stakeholder community to determine what that future programming will look like.”

RI DD Public Forum Raises Questions About Balancing Next Budget; No Firm Path Ahead

 l to r: Tracey Cunningham, Brian Gosselin, Rebecca Boss                                                                                                                                                        Photos By Anne Peters 

By Gina Macris

Rhode Island’s developmental disability agency “has no intention at this time to cut any services” to clients or reduce rates to private service providers, the departmental director told some 30 people gathered for a quarterly public forum at the Pilgrim Senior Center in Warwick Feb. 26.

Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), responded to a question from the audience about the budget proposal of Governor Gina Raimondo, who would slash a total of $21.4 million from developmental disability services, including $18.3 million in reimbursements to private providers.

Greg Mroczek, whose son and daughter both receive services from BHDDH, had asked about the budget in relation to the requirements of a 2014 federal consent decree.

 The Olmstead decree requires Rhode Island to transform its daytime services for adults with developmental disabilities from an over-reliance on sheltered workshops and segregated day programs to a system of integrated supports for employment and non-work activities that comply with the Americans With Disabilities Act.

Boss said that “presenting a balanced budget is a challenge” in any year. But it’s particularly challenging when the state faces a structural deficit of about $200 million in the fiscal year that begins July 1.   

Boss said that the governor, the Executive Office of Health and Human Services, and BHDDH are all committed to making sure that “the funding available to the dd (developmental disabilities) system is going to meet the needs of the individuals that we service.

“We believe we will have the services necessary for compliance with the consent decree,” she said. The consent decree covers daytime work and leisure activities but does not address residential services, the area where BHDDH has put an emphasis on cost-cutting in recent years.

Medicaid May Offer Path Forward  

Later in the meeting, Boss explained that the state is exploring the use of a Medicaid option that could help BHDDH balance its budget. The change, she said, also could achieve the programmatic goal of providing case management and coordination that is “free from funding conflicts and free from provider conflicts.” 

The Medicaid option involves the creation of a Health Home, the federal government’s name for an independent entity that would provide adults with developmental disabilities comprehensive care management, care coordination, health promotion, comprehensive transitional care, individual and family support, and referral to community and support services, Boss said.

For the first two years of operation, the Health Home would be supported with a 90 percent federal Medicaid match for every state dollar spent, Boss explained. For Rhode Island’s current fiscal year, Medicaid reimburses Rhode Island at a rate of 51.34 percent for every state dollar spent. For the fiscal year beginning July 1, the so-called Federal Medical Assistance Percentage (FMAP) will be 52.30.

The 90 percent federal match of the Health Home has the potential to bring in millions more in federal Medicaid dollars, but only for a limited period of time.

Boss described the Health Home approach as a “pretty good opportunity.” She asked Brian Gosselin, Chief Strategic Officer for the Executive Office of Human Services, to speak in greater detail about the Health Home option, but Gosselin demurred. 

Because creating a Health Home for developmental disabilities would involve seeking an amendment to the Rhode Island Medicaid State Plan, BHDDH must seek permission from the General Assembly before filing an application, Boss explained.  The request for that authorization to move forward with an application is in Article 14 of the governor’s proposed budget for the fiscal year beginning July 1.

It would be next January at the earliest that BHDDH could try out a Health Home for developmental disability services, and “that might be optimistic,” Boss said.

RI Experience With 'Health Homes' 

Rhode Island already has three Health Homes, Boss said; one for those with mental illness, another for those with opioid addiction, and a third for children and families, called CEDARR Services.

Having been involved in the planning for two of the three Health Homes,  she said, “I can tell you this is a heavy lift” that involves a complicated application process and fundamental system-wide changes in the state’s approach to coordinating developmental disability services. 

John Susa, who has a son with developmental disabilities and is a member of the Rhode Island Developmental Disabilities Council, relayed what he saw when he participated in the creation of CEDARR, one of the three Health Homes mentioned by Boss.

“I thought it was a great idea,” Susa said. “However, as time has gone on, I’m less certain that it was a good idea. I found a tremendous amount of money spent on case management,” he said; people “going to a lot of meetings, but the end result was a very limited amount of output in terms of the impact on the quality of life.”

Boss said she valued Susa’s perspective. “Whatever happened in CEDARR, we’ll try not to do that,” she said.

At the same time, Boss said “it’s not definite” the state will pursue the Health Home option.

She did not say what else might be done to balance the budget.

One Medicaid Rule At Odds With Need For Care

Renee Doran

Meanwhile, Renee Doran, whose adult daughter has developmental disabilities, said her daughter’s support person stayed with her when she had to go to the emergency room recently but was later denied pay for that day for the very reason that the worker was helping the young woman in the hospital setting and not in the community. 

As it turned out, her daughter was admitted to the hospital and Doran spent four days at her side. But what would have happened if she had been out of state or otherwise unavailable? Doran asked.

Heather Mincey, administrator in the Division of Developmental Disabilities (DDD), said the situation arose because community-based workers are paid from one Medicaid waiver while hospital-based workers are paid from another.

Mincey said the hospitals have the wherewithal to pay a developmental disability worker who must take a client to the emergency room.

And Boss said BHDDH can work with hospitals to let them know what services are needed. She said BHDDH often works with the state Department of Health, which oversees hospitals, and can “leverage that relationship” to make sure there is cooperation between hospitals and developmental disability services.

The public forum covered a gamut of topics, most of them related to the state’s incremental progress in meeting detailed requirements of the consent decree.

Focus on Supported Employment

Among other things, BHDDH announced an information session on employment-related services March 9 that will be tailored to the needs of individuals and families who do not get services from a particular agency but design their own programs.

Of about 3700 individuals receiving developmental disability services from BHDDH, roughly 500 are self-directed. Only about 8 self-directed individuals were able to participate in the first year of a performance-based supported employment program in 2017, according to Tracey Cunningham, the chief employment specialist at DDD.

Cunningham said the performance-based program is trying to attract more clients from the self-directed group in the current program year.

The session on March 9 for self-directed families and individuals will be from 9 to 11 a.m. in Room 126 of Barry Hall, 14 Harrington Rd., Cranston.

Anyone who is interested in information but can’t attend the session may call Cunningham at 462-3857, or email her at Tracey.Cunningham@bhddh.ri.gov

During 2017, 22 providers in the performance-based program offered employment services to 448 clients, Cunningham said. A total of 169 individuals found jobs, with only 24 of them losing employment, Cunningham said.

In the second year of the program, which offers enhanced performance payments, there are a total of 26 providers anticipating that they will be able to serve a maximum of 623 clients, she said. BHDDH has set aside $6.8 million for the performance-based supported employment program in the next budget.

But there have been difficulties training enough staff to provide supported employment services. BHDDH data presented at the forum showed a 31 percent vacancy rate in the full complement of staff – 234 positions – needed to maximize the program.  

Specially trained job coaches and other employment-related specialists for the performance-based program come from the direct care workforce, which is poorly paid and experiences high turnover.

The performance-based program is intended to boost the number of adults with developmental disabilities in regular jobs to help the state comply with the consent decree.

During 2017, the state met or exceeded the consent decree targets for employment in two of three categories: those who historically have spent their days in center-based care and sheltered workshop employees, according to figures provided by BHDDH.

There is one sheltered workshop left in Rhode Island and it will close sometime this year, said Tina Spears, the new consent decree coordinator.

The state has been lagging for some time in the number of young adults it has helped place in jobs. By now it was to have placed all of a total of 413 young adults recognized by the consent decree as having left school between 2013 and 2016.

At the end of 2017, the total number of  job holders in this young adult group was 177, according to the BHDDH data.  

Nearly 400 Wait For RI ORS Services, Including 23 Protected By Olmstead Consent Decree

By Gina Macris

In two months – from Dec. 1 to Feb. 1 – a total of 392 job hunters with disabilities have added their names to a waiting list for assistance from the Rhode Island Office of Rehabilitation Services (ORS) at the Department of Human Services.

ORS established the waiting list for rehabilitation services because of a dramatic reduction in so-called federal vocational “reallocation funds” distributed solely at the discretion of the federal government. 

Of the 392 individuals who were waiting for services Feb. 1, 336 have significant disabilities that make them “priority one” clients, according to a spokeswoman for Ronald Racine, the ORS director.  

Within the highest priority category, 23 individuals are protected by a 2014 federal consent decree which requires the state to find jobs for adults with intellectual or developmental disabilities who have been isolated in sheltered workshops or day programs, according to Racine’s spokeswoman. The decree takes its name from the Olmstead decision of the U.S. Supreme Court, which spelled out the integration mandate of the Americans With Disabilities Act. 

Those protected by the consent decree are being referred to employment-related services offered through the Division of Developmental Services (DDD) at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

According to a BHDDH spokeswoman, Tracey Cunningham, the Chief Employment Specialist at DDD, confirms clients’ eligibility and refers them to DDD social workers who help them find private providers of employment services.

Racine has emphasized that those clients who were receiving rehabilitation services before December 1 are not affected in any way by the waiting list.

For the past several years, Rhode Island has received an average of about $3.6 million in rehabilitation reallocation funds, which are given up by states that don’t meet their obligations for local support of job-related services and are re-distributed by the federal Rehabilitation Services Administration (RSA).

In the most recent round of redistribution, the federal RSA awarded $33 million to Texas because of the economic effects of Hurricane Harvey, with Rhode Island and other states receiving much less than they had expected.

The re-distribution went into effect for current federal fiscal year, which began Oct. 1. Rhode Island sought $5 million in reallocation funds for the current fiscal period, but was awarded only $532,000.

Rhode Island still receives a regular grant for rehabilitation services under provisions of Title I of the Elementary and Secondary Education Act - $10.4 million for the federal fiscal year that began Oct. 1, according to Racine.

The ORS waiting list does not affect high school special education students who seek separate ORS-sponsored pre-employment transition services intended to acquaint them with the world of work.

These services include job exploration and internships, training in social skills and independent living, as well as counseling on opportunities for more comprehensive transition programs or post-secondary education, Racine has said.

A total of about 665 students have signed up for pre-employment transition services during the current school year, according to ORS figures.

Detailed information about the list is on an ORS webpage here.

Two Pilot Programs, Two Approaches to Supported Employment, Aired at RI DD Task Force Meeting

By Gina Macris

(This article (been corrected.)

Between January and mid-August, about one in four Rhode Islanders with developmental disabilities who were enrolled in a new supported employment program landed jobs, with help from private service agencies funded through the state Division of Developmental Disabilities (DDD).

But there are signs of strain on the ability of these agencies to train the workers they need to continue to deliver results over the long haul.

 In the meantime, the Office of Rehabilitation Services (ORS) has started a much smaller pilot project , now in its second quarter of operation.

The two pilots take different approaches to funding employment-related supports for adults with developmental disabilities.

The DDD program adopts a fee-for service reimbursement model – based on the severity of a client’s disability - and a complicated billing mechanism that is similar to the one set up six years ago by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for funding all developmental disability payments to private providers.

There is no provision for funding up front to support agencies’ costs for training workers to provide employment-related services.

The ORS project offers a flat rate of $7,000 per client, with $1750 up front so provider agencies can train and assemble a team of employment specialists. Providers are eligible for two additional quarterly payments of $1750 as long as they document the progress the clients are making.  A final payment  of  $1750 is awarded at the end of a year’s time only if the client has landed a job.

According to a recent report to a federal court monitor, state officials are evaluating both the ORS and DDD approaches to determine “what aspects of each model work for providers, what challenges exist, and how ongoing efforts of the two agencies can be coordinated.”

Tracey Cunningham and Joseph Murphy

Joseph Murphy, an administrator at ORS in the Department of Human Services, and Tracey Cunningham, Chief Employment Specialist in the developmental disabilities division at BHDDH, gave status reports on their respective programs at the monthly meeting of the Employment First Task Force Sept. 12.  

Cunningham said that between January and mid-August, the DDD program found jobs for 116 of a total of 425 adults with developmental disabilities who were enrolled. Nine others found jobs that didn’t work out, Cunningham said, and they are looking for better matches.

The program could take on an additional 92 clients, up to a maximum of 517, according to figures provided by Cunningham. However, service providers are having trouble lining up the trained staff to expand their rosters and want to focus instead on doing a good job with the clients they already have, Cunningham said.

Claire Rosenbaum, Adult Services Coordinator for the Sherlock Center on Disabilities at Rhode Island College, said one training course was cancelled recently for lack of enrollment. The Sherlock Center has a contract with the state to provide the needed training tuition-free.

In addition, the “self-directed” families, those who manage services independently for loved ones, are having a difficult time finding properly trained job developers and job coaches, Rosenbaum said. 

Cunningham said about 90 percent of “self-directed” families who seek supported employment services purchase them from private agencies.  But Rosenbaum said families are having difficulty identifying agencies able to help them.

Cunningham said three agencies are accepting clients from “self-directed” families:  Goodwill Industries, Work, Inc., and a new program called Kaleidoscope.

Nicole Kovite Zeitler

Nicole Kovite Zeitler, a lawyer for the U.S. Department of Justice who monitors supported employment in conjunction with a 2014 consent decree enforcing the Americans With Disabilities Act (ADA), asked what was driving the providers’ inability to expand.

 Low salaries are the primary reason, said Donna Martin, executive director of the Community Provider Network of Rhode Island, a trade association representing about two thirds of the private agencies providing services in Rhode Island.

She said aging baby boomers also are creating an increased demand for direct care workers. Turnover is high – about 35 percent - and one in six jobs goes vacant in the developmental disability system, she said.

The General Assembly this year enacted the second consecutive raise for direct care workers. (Read related article here.)

But the increase, an estimated 42 cents an hour before taxes, is not expected to make a significant difference in the existing subsistence-level wages. Nor will it be any easier for developmental disability agencies to hire or keep new workers.

Meanwhile, the funding for the DDD supported employment program has been greatly under-utilized, even while the developmental disability service agencies have struggled to hire and train enough workers. (Read related article here.)                                 

The DDD program provides increased allowances for  job-seekers, based on the degree to which they lack independence,  but  most of the expenditures are set-aside for one-time performance bonuses to the agencies when:

•  A job coach or job developer completes training
•  A client gets hired
•  A client remains employed for 90 days
•  A client remains employed for 180 days.

Agencies receive $810 for each worker who has completed training. The remainder of the bonuses are arranged on a sliding scale, depending on the severity of the client’s disability, with the largest payments resulting from placement and retention milestones for those with the most complex needs.

Excluding any reimbursements for worker training, which were not part of the original design of the DDD program, the average maximum one-time reimbursement was initially projected to be $9,700 for young adults and $15,757 for older adults – those who left high school before 2013. Any updated figures were not immediately available.

The pilot operated by the state Office of Rehabilitation Services (ORS)  works with seven developmental disability service agencies to help a total of 49 clients find jobs. Five have had success so far, Joseph Murphy, program administrator, told task force members.

The ORS program, which receives technical assistance from Salve Regina University in Newport,  is now in the second quarter of the program year, while DDD program is in the third quarter. 

The ORS program considers a successful placement to be a minimum of ten hours a week in competitive, integrated employment in the community, although Murphy said Sept. 14 that it accepts clients no matter how many hours' work they seek. The ORS program offers a $1,000 bonus for job placements that exceed 20 hours a week and last at least six months. In the DDD program, a successful placement may involve fewer than 10 hours' work a week.

Victoria Thomas

The employment goal of the consent decree is an average of 20 hours a week of work at minimum wage or higher, although DOJ lawyer Victoria Thomas said there are no hourly employment requirements in the ADA.

“It just says people with developmental disabilities should have the option of integrated services,” she said.

The consent decree resulted from findings of the DOJ in 2014 that the state’s developmental disability services  over-relied on segregated sheltered workshops paying sub-minimum wages and non-work programs resembling day care.  As part of a system-wide overhaul, the state must support increasing numbers of adults with developmental disabilities in competitive employment in the community through Jan. 1, 2024.

The Employment First Task Force was created by the consent decree to serve as a bridge between state government and the community.

All photos by Anne Peters

This article has been corrected to reflect the fact that the up-front payment to providers in the ORS supported employment program is $1,750, one quarter of the total $7,000 allocation per client. In a clarification, Joseph Murphy, the program administrator, said it accepts clients no matter how many hours a week they seek competitive employment, even though a placement must be for at least ten hours a week to be considered successful for the purposes of the program.

Governor's Budget Would Add Total of $10 million For Developmental Disabilities Through June, 2018

By Gina Macris

A new $6.8-million incentive program, intended to encourage service providers to help Rhode Islanders with developmental disabilities get and keep jobs, will become a permanent fixture of the annual budget, according to Jennifer Wood, Deputy Secretary of Health and Human Services.

That is one of several areas of Governor Gina Raimondo’s budget proposal that indicates the state is moving to increase services for individuals with developmental disabilities in keeping with a 2014 consent decree, which requires Rhode Island to expand their access to employment and other community activity over a ten-year period.  

Wood and other key officials, who are involved in reinventing the state’s developmental disability service system, elaborated on Raimondo’s proposed budget and the way it reflects evolving trends and programs during an hour-long interview with Developmental Disability News on Jan. 24. 

Between now and the end of the next fiscal year, which concludes June 30, 2018, Raimondo proposes to increase spending for developmental disability services by about $10 million, excluding restricted funds and capital expenses.

Of that total, $6 million in federal and state Medicaid funds would be used for five-percent increases to the average wages of direct support workers, and much of the rest would reflect more expensive levels of services needed by individuals with developmental disabilities than have been recognized in the past.

Overall, Raimondo asked the General Assembly to increase the current allocation for developmental disability services by nearly $4.4 million in this fiscal year, which ends in June, from about $246.2 million to $250.6 million.

Excluding restricted and capital accounts, the added amount available for services before June 30 would be nearly $3.8 million, according to a budget breakdown provided by EOHHS. In the budget cycle which ends in June, 2018, the Governor would add a total of about about $6.1 million, for $256.7 million in all spending on developmental disability services. Excluding the restricted and capital funds, the increase would be about $6.6 million.  

All Funds vs Operating Budget

TABLE COURTESY OF EOHHS

    GR=state funds     FF= federal funds

The primary reasons that developmental disability services are expected to be more costly include:

•  The need for a better-paid, more stable workforce, funded with a 5 percent increases in direct care wages, or a total of $6 million 

• · Additional staff time spent on job hunting and job support for their clients, reflected in the new $6.8 million individualized supported employment program that is already part of approved spending

• A new version of the process for assessing individual needs appears to indicate that more supports are required than have been recognized in the past.

Supported Employment Program Has Begun Operations

Until now, all individuals with developmental disabilities who sought help in finding jobs in the community had to give up other kinds of services, with the dollar value of their personal funding authorizations remaining the same. But those enrolled in the new “person-centered” supported employment program, now accepting applicants, will get job support in addition to their other services, according to an EOHHS spokeswoman. The program is expected to involve about 200 clients.

The supported employment program was funded by the General Assembly with a $6.8 million allocation for the current fiscal year. But that sum has been untouched while the state has figured out how the program will work.

The program is poised to make its first disbursements to service providers, including incentive payments for the placement of two individuals in jobs in January. said Tracey Cunningham, Chief Employment Specialist in the Division of Disabilities at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The original $6.8 million allocation is expected to fund the incentive program into the second half of the fiscal year ending in June, 2018, according to an EOHHS spokeswoman.

The program staff will evaluate the results of the first operational year to determine how much money it will need to continue, said Brian Gosselin, the Chief Strategy Officer at EOHHS. Wood promised assured continuous funding for the program.

“What we hope to learn in the first 12 months of this brand new program is what impact $6.8 million will have,” Gosselin said. It provides one-time incentive payments when staff complete a specific training program and clients are placed in jobs. The program also pays bonuses for employment retention, in two installments, after 90 and 180 days.  

Gosselin said he and his colleagues will determine whether the $6.8 million allocation was enough and will identify the successful features of the program that can be used in the second year.

He and Wood were asked why the 22 providers participating in the program must continue to use a fee-for-service reimbursement model which requires them to bill for daytime services in 15-minute increments.

Gosselin said that is the funding model that the federal Centers for Medicare and Medicaid services has approved for daytime developmental disability services in Rhode Island.

“In order to make any adjustments to that methodology we would have to go through a very long approval process with the federal government,” he said.

But he emphasized that the new performance-based aspect of the incentive program is “what we hope to learn from.”

A discussion of the fee-for-service model and whether it works for Rhode Island is part of a larger conversation – redesigning and renewing the state’s Medicaid waiver, which is expected to occur in 2018, Gosselin said.

Wood emphasized that she didn’t want to conflate two things. “One is Medicaid billing” and the other is “programmatic contracting,” she said.

“What we set forth to do was to create the first instance in Rhode Island of performance-based contracting for outcome-based services provided to individuals with developmental disabilities. We are super-excited about that,” she said. “That’s a whole new direction for this world.”

Wood also elaborated on the design and roll-out of supported employment in the context of a U.S. District Court order reinforcing the 2014 consent decree, which had set an Aug. 1 deadline for implementation of the performance-based supported employment program.

“Implementation is an ongoing activity,” Wood said. “We met the requirements of the Court order by filing with the monitor and the Court and the DOJ (U.S. Department of Justice) the programmatic requirements” for the supported employment services program last summer, Wood said. The “person-centered” program is designed to put the needs and preferences of the client at the center of the job-hunting and support process.

Since the summer, state officials have met with providers, drawn up contracts and finalized them, she said. The next phase of implementation is enrolling clients, Wood said.

“We are actually quite proud of the fact that we can bring this program up in what in government circles is lightning speed,” she said, “and to do it in a really reliable, viable, and responsible way.”  .

“I know it may not appear that way to the public,” Wood said.  She apparently alluded to public criticism of the program, which was not completely fleshed out when it was first presented to providers in November and was not widely understood by families who direct individualized services for a loved one.

Wage Increase Intended to Help Stabilize Workforce

Governor Raimondo’s proposed $6 million for wage increases for direct care workers would provide about 5 percent more in the hourly rate, before taxes, in the fiscal year beginning July 1.

For the current fiscal year, the General Assembly approved about $5 million for a pay raise which boosted the average hourly rate from $10.82 to $11.18.   Another 5 percent would raise the average hourly rate by 56 cents to $11.74.

Governor Raimondo’s latest proposal also would provide an increase for employer-related costs for direct care workers, Wood said. 

Raimondo had been asked to include another pay increase for direct care workers in her budget plan from State Sen. Louis DiPalma, D-Middletown, First Vice Chairman of the Senate Finance Committee.

DiPalma said in a recent telephone interview that he considers Raimondo’s wage proposal for Fiscal 2018 the first step in a five-year effort to raise direct care salaries to $15 an hour.

In the meantime, the minimum wage may well be on the rise as well. The Governor’s budget proposal would increase it from $9.60 to $10.50, while Rep. Leonidas P. Raptakis, (D- Coventry, West Greenwich, and East Greenwich) has countered with a $10 minimum wage bill.

 DiPalma was asked whether a $15 hourly rate would be enough for the direct care workers in five years.

He said he plans to introduce legislation this year to link the wages of direct care workers to the consumer price index.

“We can’t tie the hands of future legislatures,” by committing them to specific dollar amounts in advance, DiPalma said.

“It’s a case of wanting people to have an appreciation for the intent of what we want to do” in placing value on the work of those who care for some of the state’s most vulnerable citizens, he said.  

A spokeswoman for the Executive Office of Health and Human Services said DiPalma and Senate President M. Teresa Paiva Weed, who backs the so-called “15 in 5” plan, “have been important partners in advocating for investments in our direct care workforce.”

“We look forward to working with our partners in the General Assembly to implement our second wage increase this year, as well as increases over multiple years as possible,” said the spokeswoman, Sophie O'Connell.

A year ago, a conference hosted by the Sherlock Center on Disabilities at Rhode Island College concluded that higher wages are a critical component in stabilizing the direct care workforce nationwide. In Rhode Island, the average annual turnover is about one third, according to the Community Provider Network of Rhode Island. That means that an adult with developmental disabilities, who relies on a good relationship with caregivers, can expect that every year, one out of every three staffers will  to the job.

Revised Individual Assessment Suggests Greater Cost

Unexpected  increases in billing from private service providers, as well as higher projections for future costs, would add an additional $5 million to federal and state-funded Medicaid-services for existing clients in the current fiscal year, according to the Governor's budget brief. (Some of that net increase would be offset by other savings.) 

In November, the Division of Developmental Disabilities began using an updated version of an assessment called the Supports Intensity Scale (SIS) in determining the needs of individual clients. Those assessments are used to assign individual funding authorizations for support services.

“I personally am really thrilled” over the implementation of the new version, called the SIS-A, Wood said. “I know all my colleagues in government feel the same way about it.”

She acknowledged that “there have been all sorts of questions in the past about the validity and reliability of the state’s approach to implementing the SIS.”

And it’s an emotional topic because it’s not just an evaluation, but one linked to funding supports for a loved one, she said.

Since the SIS was implemented in 2011, time-consuming appeals of the results and the corresponding funding levels have become common, and appeals were often granted.

In 2014, the DOJ criticized the way the SIS was being implemented in the findings that laid the groundwork for the consent decree.

“The need to keep consumers’ resource allocations within budget may influence staff to administer the SIS in a way that reaches the pre-determined budgetary result,” the DOJ said at the time. 

In the recent interview, Wood said, “We feel much more comfortable and confident about the validity” of the SIS-A.

As it has been explained to her by the experts, she said, the new versions include refined questions that address some of the more complex needs that “people did not feel were being captured in the original version.”

Wood indicated that in general, higher scores on the SIS-A have  prompted developmental disability service officials to project higher individual funding authorizations. 

Apart from three new questions asking whether a client has hypertension, allergies or diabetes, the SIS-A adopts a risk assessment which includes five overarching questions with multiple parts intended to gauge critical health needs, self-injurious behavior or community safety issues. The questions on the risk assessment were released by the Division of Developmental Disabilities in the last week. Professionals say that with proper support, such risks can be overcome.

A lot of effort already has gone into retraining interviewers, Wood said, although “it will take us two to three years to find our way fully in this new assessment.”

Heather Mincey, social services administrator in the Division of Developmental Disabilities, said the training program has addressed the way interviewers ask questions. The Division of Developmental Disabilities is trying to be responsive to families, clients, and service providers who may not feel like they’re being heard or are unsure what kind of information the interviewer is trying to elicit, she said.

At the same, the Division of Developmental Disabilities is continuing an initiative begun a year ago to save about $1.7 million in Medicaid funding, including almost  $846,000 in state funds, from existing individual funding authorizations that exceed levels indicated in past SIS assessments.

There were so many complaints about the SIS in the latter part of 2014 and the first months of 2015 that BHDDH suspended an effort to rein in the exceptions in the fiscal year that ran from July 1, 2015 to June 30, 2016.  But the initiative to  to reduce those exceptions resumed for the current fiscal year, which began last July.

Wood said that budget figures for the current fiscal year and the one ending June 30, 2018, twice listing $845,750 in savings from realignment of individual funding authorizations, don’t represent a new initiative, but a continuation of the one already underway.

The appeal process remains an option for those who disagree with their allocations.

A new policy enacted by the state last July to respond to a judicial order says that all SIS assessments will be based solely on support needs. It also says that only the Director of Developmental Disabilities has the authority to grant authorizations that exceed SIS levels. Until now, appeals have been decided by a team of administrators.

Wood and other state officials have said they hope the SIS-A will result in a reduction in the number of appeals.

Lack of Resources Underlies Problems with Supports Intensity Scale, Other RI DD Issues

photo by anne peters  

Eileen Vieira and Greg Mroczek both express concerns about the assessment used to determine funding for their adult children with developmental disabilities. 

By Gina Macris

The issue of resources – a scarcity of services and the money to finance them – ran like a thread through a public forum on Rhode Island’s developmental disability system Nov. 9 that brought together families, provider agencies and state officials. 

At the same time, participants applauded the willingness of new roster of state developmental disability officials to listen to their concerns.

Much of the discussion, during the meeting at the Cherry Hill Manor Nursing and Rehab Center in Johnston, concerned an assessment called the Supports Intensity Scale (SIS) that is used to assign individual funding packages to those persons receiving services.

“If there was adequate funding to pay for the needs” identified by the assessment, ”we would have much fewer problems with the SIS,” said Tom Kane, CEO of AccessPoint RI, a service agency.

“There’s not enough money there,” he said.

 Kane and others expressed skepticism about the accuracy of the assessment.

For example, Greg Mroczek said his son and daughter are very similar in their disabilities and needs, and yet they were assigned different funding levels.

“It flies in the face of the accuracy of the tool,” he said.

Eileen Vieira, who has a son with developmental disabilities, said some people who do the assessments “have no clue.”

They are not familiar with the person’s medical conditions or mental health issues or what is happening in the client’s life, she said. She said she did not believe the SIS captured her son’s need for behavioral support.

Heather Mincey, administrator in the Division of Developmental Disabilities, acknowledged that “a lot of times the SIS administrators did not get all of the information” necessary to make an accurate assessment of a person’s needs.

Heather Mincey

On Nov. 6, the Division switched over to a new form of the SIS which Mincey said she believes “will help a lot.” Called the SIS-A, the assessment is designed to capture behavioral and medical needs that were sometimes not apparent in results of the original SIS, according to Mincey. 

Kane said he has “never been a cheerleader for the SIS.”

The developer of the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD), maintains it differs from other assessments because it focuses not on shortcomings but on the supports an individual needs to be successful at a particular task.

Kane, however, said most family members and professionals in the field of developmental disabilities find it difficult to talk about the issues raised in the questions because “you have to examine what’s wrong” to arrive at the necessary supports.

“It’s a deficit-based tool,” he said.

A representative of AAIDD will visit Rhode Island to explain the SIS-A at an information and training session Nov. 17. (See related article.)

Mincey, meanwhile, encouraged parents to file appeals if they believe the SIS results for their sons or daughters are inaccurate – or if they have problems with a shortage of funds for transportation or other issues.

But Vieira indicated that the appeals are continuous and time-consuming, especially for parents who have full time jobs. “You have to appeal and you have to appeal,” she said. 

Brian Gosselin, Chief Strategy Officer for the Executive Office of Human Services, said developmental disabilities officials will use feedback from appeals of decisions on the SIS, along with experiences trying to solve other problems, to improve the system.

In whittling down a backlog of 224 applications for adult developmental disability services, for example, workers learned that nearly half the submissions did not contain all the required documentation, Gosselin said.  That experience will result in a redesign of the application process, he said.

Carla Russo

An independent court monitor in a federal consent decree mandating expansion of community-based services for adults with developmental disabilities has pressed the state to work through the backlog and identify all individuals aged 14 to 21 who might qualify for services after high school. 

One mother, Carla Russo, said her son left school in the 20013-2014 school year and still does not have adult services. 

Iraida Williams, an employee of the Sherlock Center on Disabilities at Rhode Island College, asked whether the application materials would be available in Spanish. Williams has appeared at several public forums on developmental disability services since April 2015, to ask the state to hire a Spanish-speaking social worker or interpreter who could field questions from non English-speaking families.

“That’s the type of feedback that we need,” Gosselin said.

tracey cunningham

Tracey Cunningham, Chief Employment Specialist at the Division of Disabilities, said 23 service providers have applied for a supported employment incentive program that is gearing up as a result of the consent decree.

Nearly every one of the 23 providers has talked about taking on new clients in the process, Cunningham said, although she didn't expect the program to begin operations until January.

If that many agencies do expand, it would be a significant shift from a system that has been in a holding pattern because of a shortage of funding. 

Cunningham said the Division of Disabilities also wants to hear from families who organize their own supports and might want to purchase supported employment services.

One mother, Mary Beth Cournoyer, said parents, who themselves have jobs, need to cover a certain number of hours of care for their sons and daughters and can’t afford to divert much, if any, funding to job development. 

Cunningham said that “we are looking” at the possibility of providing additional funding for supported employment services rather than requiring individuals to stretch their budgets.

Gosselin, meanwhile, said that state officials will be working with consultants from the National Association of State Directors of Developmental Disabilities Services for the next six months to try to come up with better ways to serve individuals and families and at the same time comply with new Medicaid regulations affecting individuals with developmental disabilities.

All photos by Anne Peters

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI Leadership in Developmental Disabilities Starts With Office of Health and Human Services

Jennifer Wood    Photo by Anne pETERS

Gina Macris

Jennifer Wood, a longtime state policy wonk with an exacting work ethic and a broad reach, is orchestrating an effort to usher in a new era for Rhode Islanders with intellectual and developmental disabilities. 

And she’s creating a brand new management team to help her do it,  including Brian Gosselin, a veteran of former Massachusetts Governor Deval Patrick’s administration, to serve as Chief Strategy Officer.  

Wood is the Deputy Secretary of Health and Human Services, the top aide and top lawyer to Secretary Elizabeth Roberts, and a former chief of staff at the state Department of Education. 

Since January, when a federal judge agreed to oversee Rhode Island’s compliance with a consent decree, Wood has emerged at the forefront of the state’s response to the court case.

Wood says she is working “all day and every day” to fulfill the state’s pledge to integrate Rhode Island adults with intellectual and developmental disabilities into the larger community of work, living and leisure. 

That pledge was made two years ago when then-Governor Lincoln Chafee signed the consent decree, promising the federal government that Rhode Island would end the segregation of more than 3,400 adults, most of them working in sheltered workshops or spending their days in isolated programs.

The consent decree gets its authority from the 1999 Olmstead decision of the U.S. Supreme Court, which says individuals with intellectual or developmental disabilities must receive supports in the least restrictive setting that is therapeutically appropriate.

 In a recent interview, Wood emphasized that the goals of the consent decree “are the changes we should and would be making anyway, and it’s just beneficial in certain ways that we’re doing it within that structure.”

Wood presented most of the state’s testimony during a day-long evidentiary hearing on compliance before Judge John J. McConnell, Jr. in U.S. District Court in April.

Other evidence before McConnell included statements from families and advocates recounting failures in service and the opinion of a court monitor that Rhode Island must immediately lay groundwork to implement the consent decree if it is to achieve its ultimate goals by the time the agreement expires in 2024.

McConnell subsequently ordered the state to complete nearly two dozen tasks - each with a short-term deadline - or face contempt of court proceedings. (Read the order here.)

Several deadlines occurred July 1, and a new wave will hit at the end of the month or the beginning of August.

In the meantime, two top developmental disabilities officials announced their departure. Maria Montanaro, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) left June 24. Charles Williams, Director of the Division of Disabilities, will retire July 22. 

A third official, Andrew McQuaide, the Chief Transformation Officer at the Division of Disabilities, recently announced that he, too, will leave July 22. (Read related article here. ) 

“There’s a lot of change going on, especially in the leadership area,” Wood said.

“We’re the stability factor,” she said of the Executive Office of Health and Human Services.

Wood said she is building a very skilled management team, with leadership and authority coming from the Executive Office of Health and Human Services, to work on the consent decree and begin transforming a system mired in myth or what she calls “urban legend.”

“I use the metaphor that we’ve got a lot of plates spinning, and we need to move on all of these fronts at one time,” she said.

“We’ve got to prioritize the specific deadlines and commitments made in Court, but none of those things happen without a lot of other pieces being in place,” like getting “basic payment systems in place; getting basic communication systems in place with our own staff.”

 According to the consent decree itself, the appropriate staff were to have been trained in how to carry out its provisions by Sept. 1, 2014.

 “Our own staff, I think, need substantial orientation and awareness of what the consent decree actually requires, as opposed to what everyone says and thinks it requires, which are two different things,” Wood said.

“In the absence of clear and transparent communication, and authoritative communication, then, always, rumor, innuendo, and urban legend will rule the day,” she said.

Wood says the state needs to do better with its external communications because, “Families are out there wondering: What are you doing? When are you doing it?”

A communications plan - one of the tasks McConnell wanted done by July 1 - has been submitted to the federal court. Like the staff training, the communication plan should have been in place nearly two years ago, according to the consent decree. 

Wood emphasized that the communications plan is not a “static” document but a blueprint for action.                                                        

Much of what she and her staff have had to confront in trying to implement the consent decree is “gaps in basic management systems at BHDDH,” Wood said.

“I find it wholly unacceptable that sometimes what we’re talking about in court is: ‘Did an invoice get paid?’ ” Wood said.

 “One embarrassing example, which I shouldn’t even bring up, is ‘Can you get the consent decree monitor paid?’ ” Wood said.

 “I don’t trivialize the bureaucratic and administrative processes, because when those don’t work, nothing works,” Wood said.

 “Before I get out of bed in the morning, that should just be done,” she said, “but you know what? It’s bureaucracy, so you don’t always have that in place.”

McConnell’s detailed order, issued May 18, gave the state 12 calendar days to get itself up to date with payments due the court monitor, Charles Moseley, and the Consent Decree Coordinator, Mary Madden. The judge also said the state must never again miss a payday for either of them as long as their respective contracts run.

The order touched the tip of an iceberg, for the state pays its bills so slowly that many direct service providers must borrow to meet payroll while they wait for the reimbursement to which they are entitled.

“I hate to hear those stories, but, of course, I’ve heard those stories,” Wood responded.

The focus should not be on paying the bills, but on “transforming basic services that are fundamental to the success of our clients,” Wood said.

Initially, “we had struggles in getting people working together, to have everyone pointed in the same direction as to what the consent decree meant and how it should be implemented,” Wood said.

 Besides BHDDH, two other state agencies are directly involved in implementing the consent decree:  the Rhode Island Department of Education and the Office of Rehabilitation Services at the Department of Human Services.

(According to testimony during budget deliberations, there is a growing opinion that the Department of Labor at Training also should be at the table.)

Each agency is a like a silo with its own way of doing things, and the purpose of the Executive Office of Health and Human Services is to get them to function as an “integrated whole,” Wood said.

Wood explained the role of each member of the management team:

• Brian Gosselin, new Senior Strategy Officer at EOHHS, will focus exclusively on developmental disabilities for the foreseeable future. He is an expert on performance-based contracting, which must be in place by August 1, according to McConnell’s order. Raises in staff wages and several other changes related to the financial arrangements the state has with private service providers also must be in place by Aug. 1. Gosselin is a fellow in the Government Performance Lab at the Kennedy School of Government at Harvard University. The Performance Lab, along with the National Association of State Directors of Developmental Disabilities Services, has consulted with the state in developing the new payment methods McConnell implemented. An accounting professional, Gosselin worked his way up in the Massachusetts budget office to the position of Chief of Staff in the Executive Office of Administration and Finance.

• Dacia Read, until now the director of the Children’s Cabinet, has taken on an expanded role as Interagency Policy and Implementation Director at EOHHS. In that capacity, she is providing analysis and support for key initiatives at BHDDH and other agencies, according to a spokeswoman for Wood. 

• Kim Paull, Director of Analytics at EOHHS, is working with Consent Decree Coordinator Madden and others to create an interim data solution to a requirement in McConnell’s order that the state make available client-specific information on employment and other services by the end of July.

• Mary Madden was hired in January as EOHHS Consent Decree Coordinator in response to pressure from the court monitor and the U.S. Department of Justice that the implementation of the consent decree lacked leadership. Wood said she works closely with Madden on a daily basis.

• Jane Gallivan, who will serve as acting Director of the Division of Developmental Disabilities, is newly retired from the same post in Delaware and has extensive experience in the equivalent position in Maine, where she led the implementation of a long-running federal consent decree in a de-institutionalization case..

• BHDDH recently hired Tracey Cunningham as an Employment Specialist to lead a shift toward the supported employment services required by the consent decree. McConnell’s order gives the state until August 1 to hire a Program Developer or Quality Improvement Officer who will lead improvements in services and supports for clients. An existing quality improvement unit at BHDDH investigates neglect and abuse.

• The Division of Disabilities at BHDDH will also have a new Transformation Officer and a yet-to-be named Chief Operations Officer.

• Fiscal support will come from Christopher Feisthamel, the chief financial officer at BHDDH, and Adam Brousseau, the department’s fiscal analyst.  

Montanaro Says Rhode Island DD Services Have a Long Way to Go; She Won't Miss the Politics

Photo by Anne Peters 

By Gina Macris

When she became director of Rhode Island’s developmental disability agency in February,  2015,  Maria Montanaro inherited a budget with no relation to actual costs that was destined to run a deficit.

 She had to work with a state­-run system of group homes resistant to change, which she said exists to preserve jobs and not to serve clients.

And she had virtually no high-­level staff to form the leadership team necessary to move forward on compliance with the 2014 federal consent decree that requires Rhode Island to transform its services for adults with disabilities from segregated programs to integrated, community­-based supports.

A little more than a year into the job, as she was trying to reduce costs to hit a budget target that seemed plucked out of thin air, Montanaro realized that working in state government was not for her.

She said Governor Gina Raimondo and the Secretary of Health and Human Services, Elizabeth Roberts, have been very supportive. After favorable state revenue estimates in May, Raimondo added to her budget request for developmental disabilities, and the General Assembly gave her most of what she wanted.

Nevertheless, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) needed everything the governor asked for - a total of $16.9 million in new Medicaid funding, Montanaro said.

In March, Raimondo had asked her to stay on until the budget process was complete, Montanaro said, and she agreed.

In the end, the political aspect of running  BHDDH proved to be ‘very draining,” said Montanaro. Her last day at BHDDH is June 24.

“It takes an enormous amount of effort to move the levers” of state government, she said in a recent interview. Formerly CEO of Magellan Behavioral Healthcare in Iowa and the Thundermist Health Center in Rhode Island, Montanaro had never worked in state government before she came to BHDDH.

In public statements in recent weeks, Montanaro has helped start a new conversation about splitting up BHDDH – a change that could not come without legislation enacted by the General Assembly.

Accustomed to dealing with budgets as professional challenges, Montanaro said she found that trying to get funding in the right places is also a political issue in state government. That was “very difficult for me,” she said.

It was “enormously frustrating,” she said, to inherit a system of fragmented services and balance sheets always running millions of dollars in the red. (The deficit has averaged about $4.6 or $4.7 million for the past eight years.)

 She offered a frank analysis of what’s wrong at BHDDH, and the reasons the Division of Developmental Disabilities should be a separate entity, with its own commissioner, working hand in hand with the state’s Medicaid administrator.

 “Politics aside, there is a responsibility to adequately fund the system,” Montanaro said.

Actually, there are two systems of care in Rhode Island for adults with developmental disabilities, and Montanaro indicated that is one of the problems.

One division of BHDDH operates a network of 25 group homes serving roughly 150 adults with a staff of less than 400 employees. The division is known as Rhode Island Community Living and Supports (RICLAS).

BHDDH also contracts with about two dozen private agencies which, in turn, hire some 4000 workers to serve roughly  3,600 clients day and night, including some 1,120 adults with intellectual challenges who live in about 250 group homes.

Montanaro said the one good thing about the state­-run homes is that employees are paid adequately. Their pay ranges from $15 to $25 an hour. Direct support workers in the private sector make minimum wage or a little higher -  an average of about $11.50 an hour. Burnout is high, and turnover runs an average of about 35 percent, according to testimony presented to the House Finance Committee last month.

 “RICLAS as a provider system needs to make changes, and it’s very hard to enact change with a unionized workforce with very rigid views on change,” she said. “We have a lot of limitations in negotiating those changes. Do we need a state-­run residential system?” Montanaro says she thinks not.

“Why not do that in the private sector; use contracts and incentives in the private sector to make sure we get people what they need,” Montanaro said.

“We should not be running a system to employ people. We should be running a system to serve clients,” Montanaro said.

Services for adults with developmental disabilities are all funded by Medicaid, Montanaro said, and the future costs can be projected fairly accurately by looking at the state’s costs for the past three years.

Montanaro contends that the social support services funded by Medicaid through the Division of Disabilities probably avoid medical costs in the long run. The social supports, like job coaching and other services, “allow them to live their best life, doing meaningful work and having a meaningful personal life,” Montanaro said. People who are more active and engaged in their communities are not as sick, using fewer medical services, Montanaro said.

“That is why I am arguing to change the structure,” she said, She envisioned a separate unit run by a commissioner of developmental disabilities – someone like Charles Moseley, a developmental disability career professional who formerly served as commissioner in Vermont.

Moseley is now the federal court monitor for compliance with the 2014 consent decree which requires Rhode Island to transform its segregated system into an integrated one over a 10-year period in accordance with the 1999 Olmstead decision of the U.S. Supreme Court. That decision clarified the integration mandate of the Americans with Disabilities Act (ADA).

Together, Rhode Island’s developmental disabilities commissioner and the state Medicaid administrator “should have a sight line over the whole experience,” so they are able to see how day supports affects utilization of medical services, Montanaro said.

“It’s pretty easy to look at caseload and utilization and set your budget,” she said. This exercise should be carried out as part of the state’s twice yearly caseload estimating conference, she said. Prior to Governor Raimondo, every administration has set an arbitrary budget target that did not reflective of projected costs, and BHDDH has responded by either lowering rates paid to private providers or running a deficit without worrying about the consequences, Montanaro said.

There’s an assumption in state government that the Division of Developmental Disabilities can lower costs by better managing the utilization of services, she said, but that’s not true.

 “The population is “fairly static,” and the needs of clients are stable, she said. Individuals who meet certain criteria are entitled by law to residential services and employment and other social supports.

The only way to reduce costs is to cut reimbursement rates to providers, which has been done in the past, she said. 

Montanaro said it appears that prior to her arrival, BHDDH may have created bureaucratic delays to save money by delaying the adjudication of appeals.

“We tried to terminate unfair practices,” she said. “We have a responsibility to plan for the service to clients.” In nearly 18 months at BHDDH, Montanaro said, her team “removed those operational barriers that we found in place here."

"Were they in place deliberately, or were they here because the department was wildly inefficient, with eligibility delays and claims lagging as a result? I won’t speculate on that,” she said.

The amount of time and effort necessary to bring about change in the state bureaucracy leads to “a lot of crisis management,” Montanaro said. “It’s designed to protect institutions from constant, fast change that could come with changes in administration every four to eight years,” she said.

In addition to having a realistic budget, Montanaro said the ideal developmental disability agency would be staffed by experts needed to move reforms forward.

As it is, she said, “the Division of Disabilities has lacked critical leaders in critical roles for all the years far back that I can see.”

For about 16 months, Charles Williams, the outgoing director of developmental disabilities, has split his time between that job and running RICLAS. His professional expertise is in mental health services rather than developmental disabilities, Montanaro said.

As a result of the consent decree - and Montanaro's efforts - BHDDH now has a chief transformation officer, Andrew McQuaide, and has just hired Tracey Cunningham of the James L. Maher Center in Newport as an Employment Specialist.

Funding has been authorized for a quality improvement officer to focus on programmatic improvements for BHDDH staff and private service providers. In addition, a high-level chief operations officer will be hired to round out the leadership team.

As for her own future, Montanaro, 58, said she will take the summer off to recharge. She plans to visit her son and daughter-in-law in France, where the couple are expecting their first child.