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

A. Anthony Antosh

A. Anthony Antosh

By Gina Macris

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

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

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

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

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

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

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

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

DD Council Weighs In

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

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

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

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

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

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

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

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

“Health Home” Merits Debated

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

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

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

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

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

Tom Kane, Left, With Antosh

Tom Kane, Left, With Antosh

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

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

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

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

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

  • Concerns about a lack of housing options

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

A Call For A More Stable Funding Cycle

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

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

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

Kane provided some history on the quarterly allocations:

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

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

Mental Health Services Lag

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

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

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

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

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

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

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

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

Critic Says Assessment Method Is “Demeaning”

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

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

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

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

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

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

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

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

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

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

'Our Lives Turned Upside Down' When Daughter Entered RI Adult DD System, Mother Says

Sustainability+commission+Dec.+meeting+main+pic+cropped+.jpg

Louis DiPalma, Rebecca Boss, and Kerri Zanchi watch A. Anthony Antosh of Rhode Island College present consumer and family perspectives on the state’s services for adults with developmental disabilities Photo by Anne Peters

By Gina Macris

A Rhode Island Senate study commission spent nearly two hours Dec. 12 laying out a catalog of strengths and weaknesses in Rhode Island’s system for helping people with developmental disabilities.

But in the end, the personal stories of two mothers, Amy Kelly of Smithfield and Martha Costa of Portsmouth, focused the commission’s attention on the crises now unfolding for at least several families who are at their wits end.

In the catalogue, their experiences come under “residential services-need for specialized medical/behavioral residential models.”

For Amy Kelly, that means that every single service provider in Rhode Island – about three dozen - has turned away her 21 year-old daughter, who is autistic, has behavioral problems, and functions in many ways as a kindergartener.

“So now what do I do?” Kelly asked in a letter to the commission chairman, Sen. Louis DiPalma, D-Middletown. Kelly is a widow, and works fulltime. Her daughter, Kayla, was asked to leave the Trudeau Center in Warwick because of injuries to staff.

For a month now, Kayla has been at home all the time and her problematic behaviors have intensified, Kelly wrote. “She is out of her routine, asking for “friends,” “yellow bus,” “trip,” and other favorite things and experiences that she misses..

Kelly has been forced to choose “self-directed” services, meaning that she must find her own workers,“which is pretty much impossible,” she wrote to DiPalma.

And the Home Based Therapeutic Services that helped Kayla outside of school hours while she was still in special education are no longer available.

“I cannot believe there are no programs in RI for families in this situation!” Kelly wrote. “When my daughter turned 21 in May everything in our lives turned upside down.”

Martha Costa * courtesy of Capitol TV

Martha Costa * courtesy of Capitol TV

Martha Costa agreed. She attended the Commission hearing at the State House on behalf of her own family and five others in Portsmouth who have become friends as their children have faced behavioral challenges growing up and have aged out of the school system into purview of the state Division of Developmental Disabilities (DDD).

As the mother of a 22 year-old man on the autism spectrum, she said her experience has been that once young people with complex needs turn 21, “there is really no place for them to go.”

The family might be told to go to a hospital, but with the exception of Butler Hospital in Providence, a mental health facility, “the hospital is horrible, because it’s just more trauma going there.”

The 21 year-old daughter of a friend of Costa’s had meltowns after her mother – her primary caregiver and the one who organized her services - died in September. The woman’s daughter, who has multiple disabilities, was hospitalized because there was “nowhere for her to go,” Costa said. The young woman was “restrained, medically and physically. It’s heartbreaking,” Costa said.

“It’s lucky you have good parents who are helping these kids, but you know, we’re all getting older and we’re not going to be able to,” she said. The aging of parents, who are often primary care givers, is a broad concern among families, according to survey results.

“There are some kids who don’t have that parent support and they’re on the street,” Costa said. “That’s sad, when they can be a very productive part of our community.”

Kerri Zanchi, the state’s Director of Developmental Disabilities, thanked Costa for coming forward.

One of the biggest challenges in residential services, Zanchi said, is a dearth of specialized homes for individuals with behavioral and other complex needs, as well as a lack of therapists and other clinicians to give them the proper attention.

“There’s a huge need coming” as teenagers with complex disabilities leave schools, she said. “We need to know what that need is and we need to start working on it lot earlier than when they turn 21 and come into our system.”

Zanchi referred to the division’s Eligibility by 17 policy, which aims to give families, schools, and the adult system plenty of time to plan a smooth transition.

In the catalogue, one of the “challenges” the state officials listed in implementing the Eligibility by 17 policy is “resource and service difference for transitioning youth vs adult services.” In the summary that family and consumer representatives submitted, they commented that “transition from high school is a ‘nightmare.“

Zanchi continued her response to Costa. “We certainly recognize every day the crises we have to manage” in order to support the individuals involved and to try to grow the system’s capacity, she said.

And there are committed providers who are willing to help the state, but who also want to do that with the right staffing that will keep all individuals safe, Zanchi said. “We are all hands on deck. I know it probably doesn’t feel like enough,” she said.

Costa agreed. “ I understand what you’ve been doing and I know that everyone has been working hard . Still, it’s not enough,” she said.

Gloria Quinn, executive director of West Bay Residential Services, said her agency works very well with the state as a partner in exceptional situations, but it is extremely difficult as long as there there is a paucity of established expertise in the community that is accessible to the developmental disabilities providers.

“Very often we are creating something new, which takes an enormous amount of time,” Quinn said, and the funding is not enough. Most importantly, when the agency helps someone with increased needs it runs the risk of jeopardizing supports for other people, particularly in a residential setting, she said.

Peter Quattromani, President and CEO of United Cerebral Palsy Rhode Island, pointed to the low wages for direct care staff that frustrate all involved; those who love the work but can’t pay the bills, employers who can’t fill jobs, and consumers and families who can’t find suitable services.

“It’s an incredibly difficult job” , he said, and attracting staff is likewise very difficult, given the low wages.

Commission member Kelly Donovan, who herself receives services from DDD, had sparked the conversation by wondering aloud why those with serious behavioral problems have difficulty finding appropriate support.

She said she agreed with Quattromani and Costa, and she added another factor that she believes contributes to the problem: a societal stigma against those with a broad range of mental illnesses who exhibit aggressive behavior.

During the last month, commission members, representing the executive branch of government, private providers, and consumers and their families, were asked to complete a survey cataloging the strengths and weaknesses of the existing Medicaid fee-for-service system, called Project Sustainability.

The commission plans to use the results of the survey, named the “Current State Assessment,” to seek advice from outside experts and further the group’s deliberations in the future, according to a statement issued at DiPalma’s behest.

Directly or indirectly, a lack of adequate funding in various contexts permeated three summaries of the survey results, each one presented by a representative of each of the three segments of the commission. Transportation, for example, has become a bigger problem now that there is a greater emphasis on community-based services, which require more than the two daily trips usually allowed by individual funding authorizations. Families also cited difficulties of non-English speakers in getting information and services.

But Rebecca Boss, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, also said the developmental disabilities budget has increased significantly since 2015, and listed advances made in the last two years, including:

  • $6.8 million for supported employment

  • two annual wage increases for direct care workers (The average hourly pay for front-line workers is $11.36 an hour)

  • the acquisition of a modern data management system

  • an increase in staff for quality management, implementation of a federal civil rights consent decree and for Medicaid-mandated Home and Community Based Services, as well as assistance in maximizing the existing budget.

She described the funding needs of the system as “dynamic.”

“We are engaging in discussions with our partners about what those needs are,” Boss said. “Governor (Gina) Raimondo has demonstrated a willingness to look at the system and make adjustments in the budget as we go along. So this is the process that we’re currently working on and engaging in those conversations on a regular basis.”

Raimondo is to present adjustments for the current budget, as well as her proposal for the next fiscal cycle, during the third week of January.

Christopher Semonelli, a commission member and the father of a teenager with complex needs, commented on the origins of Project Sustainability, which seemed to him like system “in a death spiral, and there was basically a feeding frenzy as to how to continue the system; how to go after the available funds.”

“I don’t think the legislative base should be blamed” for cutbacks that launched Project Sustainability in 2011, “because there was a lack of advocacy, “he said. “Strong advocacy could have prevented that from happening. That is huge and needs to be built going forward.”

DiPalma had the last word. Semonelli “made a great point about advocacy, but he shouldn’t let the General Assembly off the hook,” DiPalma said. “This is where the buck stops.”

Read the summaries presented at the meeting. For the state’s assessment, click here. For consumer and advocates’ comments, click here. For service providers’ comments, click here.

RI Project Sustainability's Plan For Enhanced DD Services Was "Cover" For Budget Cuts - Testimony

By Gina Macris

Louis DiPalma, Chairman of Project Sustainability Commission Photo By Anne PETERS

Louis DiPalma, Chairman of Project Sustainability Commission Photo By Anne PETERS

Project Sustainability, introduced in Rhode Island in 2011 as a method for enhancing individualized services for adults with developmental disabilities, instead has diminished the quality of their lives.

That assessment set the stage Oct. 9 for deliberations of a Senate-sponsored commission charged with studying Rhode Island’s past and present system of developmental disability services, with the aim of designing a better future.

At the same time, the chairman of the 19-member panel, Sen. Louis DiPalma, D-Middletown, emphasized that the purpose of the commission is not to assign blame but to learn from the past and present to figure out how to best move forward. The commission must report to the Senate by March 1.

Project Sustainability was “a well-manicured statement to cover up” cuts in funding and services, said Tom Kane, CEO of AccessPoint RI, one of three dozen private agencies serving adults with developmental disabilities in Rhode Island.

Kim Einloth Testifies

Kim Einloth Testifies

Project Sustainability had a “major impact on the quality of service we were able to deliver,” said Kim Einloth, a senior director at Perspectives Corporation, one of Rhode Island’s largest service providers. She said the community-based program of day services was forced to put people in large groups, lay off specialists like occupational and speech therapists and discontinue consulting services with physical therapists.

Gloria Quinn, executive director of West Bay Residential Services, said she noticed immediately that the disabilities system was “demoralized, decreased and degraded” when she returned to Rhode Island after a nine-year absence in 2013. When Quinn moved out of state in 2004, she said, Rhode Island was one of the top-ranked states nationwide for its programs for adults with developmental disabilities. Quinn sits on the commission.

In a meeting that lasted about 90 minutes, the commission covered a broad range of topics related to Project Sustainability and the controversies linked to it: inadequate overall funding, depressed worker wages, and an assessment used – or misused - to determine individual allocations for services.

The planning and execution of Project Sustainability has been well documented, primarily by Burns & Associates, healthcare consultants hired by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) in 2010.

DiPalma said that from what he’s seen, Burns & Associates was “charged with providing a plan, and the state chose to do something different.”

Rebecca Boss, the current director of BHDDH, reviewed the history of Project Sustainability, designed to bring uniformity to funding for specific services and enable families to make informed choices about services. Project Sustainability aimed to use data gathered through new funding methods to create incentives for services to be delivered in the most integrated setting possible, she said.

“Change is hard, and even with perfect planning, it would not result in everyone’s needs being met,” Boss said.

“I think everyone knows” that the current administration – including Governor Gina Raimondo, Kerri Zanchi, the Director of Developmental Disabilities, herself, “is committed to working with our stakeholders” to figure out “where do we go from here,” said Boss.

“Many may have different views of history, as is often the case,” said Boss, a commission member.

Kane, of AccessPoint, said he didn’t want his anger about Project Sustainability to reflect the way he regards the current administration. The working relationship service providers now have with the BHDDH administration, he said, is “better than we’ve had in a very, very long time.”

Tom Kane Chats After The Commission Meeting

Tom Kane Chats After The Commission Meeting

The plans for Project Sustainability “talked about individualizing services and moving toward person-centeredness and all of the lovely buzz words,” said Kane, but the rhetoric really described “a system we already had that got dismantled.”

While Project Sustainability talked about individualization, inclusion and community support, the regulations governing developmental disability services “were always about center-based group activity.”

“Finally, under this administration, the regulations have been put forward that will put back the flexibility we need,” Kane said. The new regulations have passed a public comment period and are to be finalized by the end of the year.

Funding, however, has a long way to go to support the kinds of changes providers, families, and consumers want, by all accounts.

Commission member Andrew McQuaide zeroed in on historical funding of developmental disability services.

McQuaide said that developmental disability spending had been on a downward trend in Rhode Island since 1993.That was the year before the last residents left the Ladd School, the state’s only institution for those with intellectual challenges.

Citing According to Burns & Associates, McQuaide said:

  • Between 1993 and 2008, Rhode Island’s expenditures for developmental disabilities decreased by 29.5 percent at the same time the national rate increased by 17.8 percent.

  • Rhode Island is only one of 14 states to report a reduction between 2007 and 2009 in per-person expenditure, a decrease of 4 percent at the same time the national trend registered a 5.6 percent increase.

McQuaide also said that anecdotal information indicates about half the state’s private providers were reporting operating deficits in 2009, ill-preparing them to absorb the additional funding cuts that came along with Project Sustainability.

An overview prepared by the Senate Fiscal Office showed that actual spending on developmental disabilities, including both state and federal Medicaid funds, dropped $26.2 million in the fiscal year that began July 1, 2011 when compared to spending during the previous 12 months.

The overview shows that, adjusted for inflation, the current budget still has not caught up to the spending reach of the developmental disability system in the year before Project Sustainability was enacted.

Chart courtesy of RI SENATE FISCAL OFFICE

Chart courtesy of RI SENATE FISCAL OFFICE

Prior to Project Sustainability, private agencies negotiated an annual sum for each individual in their care.

The new system generated standard reimbursement rates for each of 18 different services that agencies were authorized to provide.

Kane noted that from the outset, the funding for Project Sustainability was not designed to cover all of the actual costs of private providers, almost all of whom had submitted extensive financial data to the state.

A BHDDH memo for rate-setting that the department sent to the General Assembly noted that the reimbursement rates eventually adopted for Project Sustainability were 17 to 19 percent below “benchmark rates” which Burns & Associates calculated from the median wage for direct care jobs - $13.97 an hour.

The state could not afford more, the memo said, citing the poor economy at the time.

The memo said the lower reimbursement rates were calculated by reducing the allowances for fringe benefits for workers and in some cases, cutting transportation and program expenses.

Kane, who is familiar with the rates in the memo and other Burns & Associates documents, said providers were “actually told in a meeting, ’We’ll see what this (the benchmark wage) costs but we won’t actually bring this to the legislature because they’ll laugh at us.’

“I don’t understand why the expenditure of well over a million dollars on Burns & Associates wasn’t taken seriously enough” to put forward actual expenditures “and let the legislature decide whether it was appropriate,” Kane said.

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

McQuaide said the experience of the last seven years has shown that it was a “fiction” to think the system of private providers would be forced to implement Project Sustainability without compromising services.

The state has a separate system of group homes for adults with developmental disabilities which has not been subject to rules or the pay cuts that came with Project Sustainability. Instead, the workers are unionized state employees with full benefits.

Donna Martin and Andrew McQuaide

Donna Martin and Andrew McQuaide

In the privately-run system, McQuaide said, the wages paid direct care workers still don’t reach the original $13.97 per hour “benchmark”, or median-pay rate, calculated by Burns & Associates.

The most recent data available indicates that the average entry wage for direct care workers is $11.37 an hour. It comes from a survey of member agencies of the Community Provider Network of Rhode Island (CPNRI) conducted last February, according to Donna Martin, executive director of the trade association, which represents about two thirds of service providers in Rhode Island. Martin said she is in the process of updating the figure.

Martin, a commission member, told the panel that CPNRI has met with the BHDDH leadership and representatives of Governor Raimondo’s office and the Office of Management and Budget to review current provider reimbursements in comparison to an extensive menu of rates envisioned by Burns & Associates in planning Project Sustainability. BHDDH, OMB, and the Governor have already planning a budget proposal for the next fiscal year.

DiPalma said Burns & Associates originally wanted to advance a “competitive” average wage of $15.46 an hour.

Addressing wage inequities will be a critical focus of the commission’s work, he said. Two years ago, DiPalma started a campaign to raise direct care wages to $15 an hour over five budget cycles. Massachusetts already pays its direct care workers a $15 hourly rate, and many Rhode Islanders find they don’t have to move to take advantage of these higher-paying positions at agencies that are an easy commute from their homes, DiPalma said.

Another source of rancor over the last several years has been the assessment used to determine individual funding levels under the terms of Project Sustainability – the Supports Intensity Scale (SIS), which was updated in November, 2016.

Kane has said data compiled by Burns & Associates indicate the original version of the SIS was used to cut individual funding. See related article

A. Anthony Antosh

A. Anthony Antosh

Even though the SIS has been revised, the state’s top academic researcher in developmental disabilities, A. Anthony Antosh, told the commission that using the SIS as a funding tool violates the original intent of the instrument as an aid for professionals designing individual programs of support for persons with disabilities.

Antosh, a commission member, is the retiring Director of the Sherlock Center on Disabilities at Rhode Island College.

His comments apparently prompted Kane to recall another moment in a Project Sustainability planning meeting in which Burns & Associates’ human services partner praised the multi-faceted assessment providers were using at the time to figure out how much funding a particular person needed. In each case, the assessment took into account intellectual capacity, responses in various situations and potential risks.

That Burns & Associates partner, the Human Services Research Institute of Oregon, wrote a memo to the General Assembly saying that “ ‘resource allocation’ should never be thought of as mostly an exercise involving the assessment and simple service delivery.”

Policy makers should also take into account the goals of the programs, such as increasing community integration or increasing employment, before determining the array of services and rate schedules, HSRI said.

“Data collected by a measure such as the SIS is necessary,” the memo said, “but certainly not sufficient.”

The memo was condensed before it reached the General Assembly, and the recommendation against using the SIS alone to determine individual funding was eliminated,

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

Photos by Anne Peters

Photos by Anne Peters

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

By Gina Macris

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

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

The changes have two drivers:

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

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

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

A. Anthony Antosh

A. Anthony Antosh

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

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

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

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

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

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

Howard Cohen

Howard Cohen

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Low Wages Create Labor Shortage in RI DD Services; Advocates Testify for Higher Pay

By Gina Macris

Low wages for workers who provide direct care for adults with disabilities in Rhode Island have led to such a crisis that some agencies lose 80 percent of their front-line staff within six months, although the average annual turnover rate is 33 percent.

To fill the gap, their employers spend millions of dollars in overtime and in training new hires, only to lose them again.

Advocates for the developmental disability service system spelled out the consequences of poverty-level wages for direct care workers during a hearing before the Senate Finance Committee March 21.

A Rhode Island College expert submitted written testimony which said that an underpaid workforce results in instability, anxiety, and a diminished quality of life in the people it serves. 

The new developmental disabilities director, Kerri Zanchi, also linked the stability of the workforce to the quality of services and outcomes for the people it serves. 

Governor Gina Raimondo has proposed adding $6.1 million for raises to direct care workers in the budget beginning July 1. If it passes, it would provide the second annual raise –albeit a modest one – for some 4,000 part-time and full-time caregivers.

The first raise was enacted under pressure from federal enforcement of a 2014 consent decree. The $5-million line item added about 36 cents an hour for front-line caregivers, giving them an average of $11.18 an hour retroactive to July 1, 2016, according to Sen. Louis DiPalma, D-Middletown, the first vice-chairman of the Senate Finance Committee.

DiPalma is leading a drive to increase the average wage for direct care workers and home health care workers to $15 an hour by July 1, 2021. Testimony during the hearing indicated that Massachusetts is on track to reach that goal in 2018.

DiPalma also noted that Rhode Island’s minimum wage rose 30 percent between 2012 and 2016, from $7.40 an hour to the current $9.60 an hour, while the average pay for direct care workers increased 1.6 percent during the same period.

Governor Raimondo is seeking a 90-cent increase in the minimum wage, or $10.50 an hour, for the fiscal year that begins July 1.  

The interstate disparity in wages, compounded by the fact that many Rhode Island residents can just as easily work in Massachusetts as in their home state, puts the developmental disability system at a distinct disadvantage in competing for employees.

Rhode Island’s system is “economically inefficient,” said Jim Parisi, spokesman for the Rhode Island Federation of Teachers and Health Professionals, who represents workers at Trudeau Memorial Center, one of about three dozen private developmental disability service providers in the state.

Donna Martin, director of the Community Provider Network of Rhode Island (CPNRI), said that an average of about 16 percent of jobs go unfilled, forcing employers to use overtime to fill vacant shifts, particularly in situations where safety requires a certain minimum level of staffing.

In some agencies the job vacancy rate is as high as 25 percent, according to Rebecca Boss, the acting director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Martin, meanwhile, said reports from 18 of the 25 CPNRI member organizations indicate they spend a $2 million a year on overtime, suggesting that the total statewide could be higher. Turnover, which includes training new hires, costs an average of about $4900 per person, she said.

A raise this year is expected to be slightly bigger than the average of about 36 cents an hour enacted in the current year. The exact amount is difficult to calculate in advance because the rate the state pays providers reflects wages and some, but not all, overhead costs, Martin said. And overhead costs vary from one provider to another.

The workforce crisis is the biggest single issue her membership faces, Martin noted.  Data she submitted to the committee indicated that the demand for staffers who provide direct support of adults with developmental disabilities is expected to grow 38 percent by 2022.

In written testimony, A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, linked the labor shortage to a diminished quality of service for individuals with disabilities – an issue which is at the center of ongoing enforcement efforts of the 2014 federal consent decree.

With some agencies losing more than 80 percent of new hires within six months, Antosh said, workers cite low pay and the complexity of the work as the chief reasons they leave. They must work two or three jobs simply to make ends meet, he said.

A growing body of research documents that a stable, high quality direct support staff produces positive results in the population it supports. Those benefits include “increased personal competence, increased employment, increased social networks and social capital and increased satisfaction with life,” Antosh wrote.

“A direct support workforce destabilized by low wages, limited opportunities for professional development and a lack of a career ladder results in instability and anxiety in the lives of the people they support,” Antosh said.

Those who depend on services have “decreased opportunities for community connection, decreased employment, and a general decrease in quality of service,” Antosh said.

Quality service, with access to community-based employment and non-work activities, are a key goal of the 2014 consent decree and a subsequent court order, which aim to enforce the 1999 Olmstead decision of the U.S. Supreme Court.

That ruling re-affirmed Title II of the Americans With Disabilities Act, which says that individuals with disabilities are entitled to receive services in the least restrictive environment that is therapeutically appropriate.The decision presumes that the community is the least restrictive environment. 

RI DSP Graphic 1 3-22-17

At right are submitted to the the Senate Finance Committee March 22 by the Community Provider Network of Rhode Island, a trade association of 25 private agencies that provide services to adults with developmental disabilities. In the graphic, DSP stands for "Direct Support Professional," the title given to front-line workers. The average hourly wage does not include raises enacted  that took effect July 1, 2016.  

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

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. 

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.

 

RI Senate Committee Gets a Taste of Complex Federal Consent Decree

Charles Moseley, independent federal Court Monitor, left, and RI. Sen. Joshua Miller, D-Cranston and Warwick, chat after Feb. 25 briefing on federal consent decree requiring community integration of people with developmental disabilities. 

 

By Gina Macris 

Members of a Senate committee began to grapple with the complexities of a federal court case that has the potential to require the state to allocate millions of dollars to reform its services to Rhode Islanders with disabilities.

For an hour on Feb. 25, The Health and Human Services Committee was briefed about a federal consent decree that requires the state to give those with disabilities a chance to work and do other meaningful activities in the community.

 After the briefing, committee chairman Joshua Miller, D-Cranston and Warwick, said it wasn’t clear to him whether the state agency responsible for services to adults with developmental disabilities needed to reorganize, or whether a greater overall allocation is needed to comply with the consent decree.

“At any point will the decree require minimum funding?” Miller asked Charles Moseley, the independent Court Monitor in the federal case.

 Moseley replied that “the consent decree requires minimum funding now.”

Moseley said the “minimum funding” relates to activities necessary to achieve compliance, like an official to coordinate employment services, so that more people who need supports can get “up and working” in the community.

He gave other examples, saying that the key areas are employment and other meaningful non-work activities.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, presented statistics which show a smaller percentage of people with developmental disabilities were working in the community in 2015, a year after the consent decree was signed, than were in supported employment in 2011, the year the General Assembly enacted a 13 percent budget cut in services that support them.  

The employment figure decreased from about 23 percent to about 21 percent in four years’ time, according to Antosh’ figures.

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

“Roughly 40 percent are 50 or over, and most of them have very little to do,” Antosh said.

Moseley said that “if the investment is not made now, (the goals) won’t be met in ten years,” the lifespan of the consent decree.

But Moseley did not provide Miller with a dollar amount. 

In a hearing before U.S. District Court Judge John J. McConnell Jan. 26, both Moseley and the lawyer for the U.S. Justice Department, Victoria Thomas, said flatly that the current state budget does not contain enough money to fulfill the requirements of the consent decree.

And a week later, Governor Gina Raimondo made the same categorical statement in her budget message to the General Assembly.

Raimondo’s budget proposal asks for an additional $8 million in in developmental disability funding funding in the current fiscal year, bringing the budget to $237.7 million by June 30. The increase is designed to shore up the developmental disabilities division in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

In the coming fiscal year, developmental disabilities would receive slightly less, $235.2 million under the governor's plan. However, the administration is proposing a way to sharply increase spending for community-based supports that are required by the consent decree without requesting another budget hike. Instead, the increase would be funded by savings that the administration hopes to achieve through major changes to residential programs, asking 500 adults with disabilities to move voluntarily from expensive group homes into shared living arrangements with families.