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.

RI DD Services Get A "Status Quo" Budget, But Can It Keep Up With Client Needs And Consent Decree?

By Gina Macris

With Rhode Island Governor Gina Raimondo signing the $9.6 billion budget bill into law June 22, the service system for adults with developmental disabilities averts a crisis in the fiscal year beginning July 1, and instead continues the status quo.

That is to say, the system is still struggling to meet the needs of some 4,000 Rhode Island adults with developmental disabilities, including those who are seeking services for the first time.

Higher-than-expected revenue estimates in May enabled the House and the Senate to restore a number of reductions in the human services which Raimondo had proposed in January, including about $18 million in developmental disabilities.  On June 20, the Senate ratified the House version of the budget and sent it to the governor.

Until the state’s intent to restore the funds for developmental disability services became clear in mid-May, an independent federal court monitor had been preparing to make recommendations to U.S. District Court Judge John J. McConnell, Jr. for an order to ensure adequate funding..

It was the second time since a federal civil rights consent decree was signed in 2014 that a court order, or the threat of one, has surfaced during the budget-making season at the State House. There’s no reason to believe that the monitor won’t re-visit that idea next year if funding for developmental disability services fails to keep pace with the stepped-up demands of the consent decree, which requires the state to shift from segregated services to those offering integrated, community-based opportunities by 2024.

One goal illustrates the challenges. The state is to have part-time jobs by Sept. 30 for all young adults who left high school between 2013 and 2016 and who who want to work, but with three months remaining until the deadline, those with jobs number 235, or 55 percent, of a population of 425, according to figures released last week.

The budget does include $1.5 million in technical assistance for private providers of developmental disability services trying to adjust to integrated services for clients, according to Carmela Corte, the chief financial officer of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). Those are federal-state Medicaid dollars that will be taken from the allocation for direct services.   

A relatively small number of adults with developmental disabilities who choose to use their funding authorizations from BHDDH for in-home care will be able to pay workers 10 percent more, which amounts to about $620,000 in the budget, Corte said.

By The Numbers 

The General Assembly also adjusted the current budget to close out the fiscal year, adding about $15.6 million to cover an operating deficit as recommended by Raimondo, who acknowledged the shortfall deficit as a one-time event.

The overall numbers in developmental disabilities:

  •     $272.1 million for Fiscal 2018, which ends June 30    
  • ·   $271.4 million for Fiscal 2019, which begins July 1

Administrators, however, tend to work on a day-to-day basis with an “operating budget,” which includes only federal and state Medicaid funds available for providing direct services.

For the current fiscal year, federal-state Medicaid dollars are budgeted at $269.8 million.  For the fiscal year beginning July 1, the federal-state Medicaid total is $269.2 million.

No Raises For Frontline Workers

One big-ticket item missing from the next budget is a pay increase for employees of private service providers who work directly with adults with developmental disabilities.  The underpaid workforce is sure to be a major issue for advocates when the General Assembly reconvenes in January.

Incremental raises for these workers during three budget cycles have allowed them to keep just ahead of the minimum wage, in a range which puts private service providers in competition with the same pool of workers as fast-food restaurants and other retail businesses. 

Including the most recent raises, in 2017, the average direct care worker is paid about $11.50 an hour. The minimum wage, which increased from $9.60 to $10.10 on Jan. 1, is due for another bump, to $10.50, on Jan. 1, 2019.

Before the General Assembly cut $26 million from the developmental disabilities budget in 2011, the average pay at some private agencies serving adults with developmental disabilities averaged close to $15 an hour, with comprehensive health insurance and other benefits.  Career ladders afforded front-line workers opportunities for advancement.

Since then, the workforce has become unstable, with employers unable to fill one out of six jobs, according to the Community Provider Network of Rhode Island, a trade organization. Turnover ranges from about 30 percent to about 75 percent, depending on the agency. In some cases, workers leave direct care work for other jobs with similar pay but much less responsibility. In other cases, they leave for the same type of work at better pay in Massachusetts, which is scheduled to offer a minimum of $15 an hour for such work July 1.

Budget Questions At Public Forum

The issue of worker pay surfaced at a public forum hosted by the Division of Developmental Disabilities (DDD) June 18 at the University of Rhode Island, with one parent lamenting the lack raises in the year ahead.

Kerri Zanchi                         Photo By Anne Peters

Kerri Zanchi                         Photo By Anne Peters

Kerri Zanchi, Director of Developmental Disabilities, and other staff of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), explained various aspects of the budget and outlined initiatives intended to help the service system in the long run.

Asked whether the “status quo” funding approved by the General Assembly would result in cost overruns in the coming fiscal year, Zanchi didn’t say.  Instead she emphasized that DDD must use its data “every single month” to support its projections and “really understand what our needs are going to look like.”  

But BHDDH projections of need for developmental disability services don’t figure in the semi-annual Caseload Estimating Conference that comes up with figures for Medicaid entitlement costs.

And the state Budget Office does not take actual costs into account in making recommendations to the governor, a spokeswoman said earlier this year.  Rather it uses “estimated growth rates in the cost of providing services,” according to Brenna McCabe. She did not say who makes the estimates or otherwise elaborate.

The new budget doesn’t allow for increases in individual funding authorizations – one of the chief causes of the cost overruns which prompted the BHDDH request for additional funding in the budget cycle now winding down.

The governor cited higher “acuity” in acknowledging that increased per-person costs fueled a projected $15 million deficit in developmental disability costs in the fiscal year ending June 30. That factor, however, was ignored in her presentation of Fiscal 2019 budget that begins July 1.

Ever since November, 2016, there has been an upward trend in individual authorizations, something  that is expected to continue for several years, until all clients have been evaluated at least once using a revised standardized interview that is considered more accurate than the previous one. Both the original interview, called the Supports Intensity Scale (SIS), and the revised one, called the SIS-A, were developed by the American Association on Intellectual and Developmental Disabilities.  

Budget Language Opens Door To Innovation

The budget contains language that responds in to a variety of concerns about who manages resources available to adults with developmental disabilities and how providers are paid. 

It gives BHDDH the required state legislative authority to apply for a so-called “Health Home” and an “Alternate Payment Method” to create pilot programs for changes in case management and provider reimbursement better suited to integrated, community-based services that are tailored to individual preferences and needs, as required by the Americans With Disabilities Act.

The Centers for Medicare and Medicaid Services (CMS) hold that neither the states, as funding authorities, nor the services providers themselves can also be responsible for designing and managing individualized programs of activities without conflicts of interests.

States should have another disinterested party in the role of case manager, according to CMS.

The Health Home is the CMS name for the third-party case management organization that would oversee individual clients’ Medicaid and Medicare services, while the Alternate Payment Method allows states to explore changes to the usual fee-for-service reimbursement to private providers.

 Zanchi and Kimberly Reynolds, BHDDH administrator of financial management, explained the goals of the applications at the public forum June 18.

Reynolds described the Health Home as a “one-stop shop where individuals and families may get assistance in managing their services.  BHDDH has three health homes, mostly in the substance abuse and mental health areas.”

By way of background, Zanchi said that the idea for applying for a Health Home grew out of collective thinking in DDD during the last year about ways to put its clients in the driver’s seat in shaping their activities, or as she put it, developing “person-centered practice.”

For one thing, the system can’t be truly “person-centered” without case management that is free of conflicts of interest, Zanchi said.

She also said a pilot program for an Alternate Payment Method might generate solutions to problems faced by the current fee-for-service reimbursement system, which poses challenges to providers trying to get their clients into the community in meaningful ways.

The fee-for service system requires providers to bill in 15-minute increments, but only when a client is actually receiving services. It doesn’t allow providers to plan ahead, because reimbursement depends on day-to-day attendance at a particular activity, without exceptions for occasions such as client’s medical appointments, illnesses, or vacations.

As the state moves to a system with greater consumer control and consumer empowerment, Zanchi said, providers will need to be able to count on more staff to get their clients into the community.

Despite the consent decree, the reimbursement system is still geared to funding programs held in facilities like sheltered workshops and day centers, where one staff member can keep an eye on larger groups of individuals than is possible in the community.

Zanchi and Reynolds each said they want the public to participate in drawing up the applications for the Health Home and Alternate Payment Method.

“We have a lot of work to do in a very quick time frame, and like everything else we’ve done, we’re going to do it with our constituents,”  Zanchi said.

The state anticipates submitting the applications, receiving decisions, and beginning pilot programs by next Jan. 1, according to Zanchi. CMS would pay 90 cents on the dollar to support the pilot programs for a maximum of two years.

Flyers distributed at the meeting gave a schedule for public meetings on the applications, but the schedule was put on hold. Reynolds said she is the contact person for the Health Home. She can be reached at 401-462-3941 or at Kimberly.Reynolds@bhddh.ri.gov 

RI DD Advocates Warn Of 'Massive Retrenchment' From Proposed $21.4 Million Spending Reduction

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

Donna Martin, executive director of the Community Provider Network of Rhode Island,  speaks during the Day Of Action, sponsored by the provider network. Standing, l to r, are Rep. Deborah Ruggiero, (D-Jamestown and Middletown); Rep. Dennis M. Canario, (D-Portsmouth, Little Compton and Tiverton), and Rep. Teresa A. Tanzi, (D-Narragansett and South Kingstown.  Seated on the steps below the State House Rotunda are advocates representing the service provider Spurwink RI. 

By Gina Macris

Rhode Island would see a “massive retrenchment” in services for adults with developmental disabilities if Governor Gina Raimondo’s proposed budget is enacted for the next fiscal year, a spokeswoman for providers told members of the House Finance Committee at a hearing March 29.

Pam Goes 

Pam Goes 

In human terms, Raimondo’s plan to cut $21.4 million from current spending levels would diminish the quality of life for some 4,000 individuals whose care is already undercut by low wages and high turnover among caregivers, said Pam Goes of Warwick, who has two sons with developmental disabilities, including one who cannot express his needs verbally. 

Goes delivered the same message at a “Day of Action” in commemoration of March as Developmental Disability Awareness Month under the State House Rotunda in mid-afternoon as scores of adults with disabilities and their supporters lined the steps leading to the House and Senate.  

State Sen. Louis DiPalma, D-Middletown, told the crowd that “people with developmental disabilities have the ability to lead a full and prosperous life. That’s why I’m here.'

Rep. Teresa Tanzi, D-Narraganset and South Kingstown, said that for the compassionate work they do, the wages of direct care workers are an “injustice.”

Tanzi, who chairs the Human Services Subcommitte of the House Finance Committee, presided over the budget hearing later in the afternoon.

Of the overall $21.4 million reduction from current spending levels in the next fiscal year, $18.4 million would come from private the agencies that provide most of the services and $3 million would be taken from a state-operated system of group homes.

Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), did not mince words when she addressed Tanzi and other members of the House Finance Subcommittee.

She said “there is no way” that service providers will be able continue efforts to comply with new federal Medicaid regulations requiring integrated, community-based services and a 2014 federal consent decree that focuses on competitive employment for adults with developmental disabilities.

Needed Changes Are "Not Going To Happen" 

Compliance with the 2014 consent decree and the new Medicaid regulations, called the Home and Community Based Final Rule, depends on system-wide changes in the manner of care, and “that’s not going to happen” with an $18 million cut to private service providers, Martin said.

Instead, there will be a “tremendous reduction” in services, she said, with agencies forced to prioritize the health and safety individuals in their care. Employment –related services and the services necessary to provide community integration will suffer if the agencies must absorb an $18 million, Martin said. Workers’ hours and wages – which hover slightly above minimum wage – would be cut.

David Reiss, CEO of the Fogarty Center, the largest non-profit service provider in the state, said the agency simply cannot survive if the state imposes the $18.4 million reduction across the board. It represents about a 7 percent cut in spending. 

Reiss said he has closed five group homes in the past year, not because of a lack of demand but because he couldn’t find enough workers to staff them. Staff turnover is about 40 percent, he said. 

The starting wage at the Fogarty Center is $10.50 an hour, he said. Although the General Assembly has raised the pay for direct care workers slightly in the past two years, the minimum wage also has increased. It is now $10.10 and is scheduled to go up again next January to $10.50 an hour. Massachusetts has an $11.00 minimum wage and has agreed to pay direct care workers a minimum of $15 an hour beginning in July.

Raimondo’s budget includes no money for raising the wages of direct care workers this year, although a bill in the legislature would link increases in the minimum wage to raises for front-line staff, according to Martin, the CPNRI director.

High Staff Turnover Worries Parents

Pam Goes, the Warwick mother, discussed the impact of the high staff turnover on her non-verbal son.

“We feel like we are constantly starting over,” she said. Her son Paul needs to trust his caregiver, and that trust comes only with time and continuity of high quality care.

“It’s a difficult job for them to be on top of his moods ,” she said. “You need to get to know him,” she said. Paul will often test new staff to see how much he can get away with, she said, and he can become aggressive.

“I worry that there are so many people in and out of his life,” she said. “I worry that his communication is so limited. I especially worry about what happens when I’m gone,” she said.

“I want to advocate for a sustainable system where people live a good life,” she said. “It’s a lot of stress knowing the situation could become more untenable.”

About four thousand people receive services, she said, and “every family has a story like mine.”

Tom Kane, the CEO of AccessPoint Rhode Island, said Goes reminded him of the best compliment his agency ever received: “The work you did for our son allowed us to be the family we wanted to be."

A Call For More Funding

The budget is “about priorities. It’s about morality, and it’s about people” he said. “It should be about people.”

Kane called on the legislators to approve a proposed $15.3 million budget increase to cover cost overruns in the current fiscal year, as Raimondo has proposed, and then to add another $15 million in the budget cycle beginning July 1 to deal with a structural deficit and allow some growth.

Raimondo’s budget proposal does not acknowledge the structural deficit, he said. Instead her plan only temporarily grants additional funding, only to take it away in the next fiscal year.

The General Assembly approved total spending of $256.9 million for the current fiscal year. Raiimondo’s proposal would increase that figure to to $272.2 million. But in the fiscal year beginning July 1, her bottom line would drop to  $250.8 million. That figure is  $6.1 million less than the enacted budget and $21.4 million less than the temporary budget expansion Raimondo has proposed through June 30.

Kane presented figures which showed Rhode Island spends significantly less on adults with developmental disabilities than neighboring Massachusetts and Rhode Island.

The State of the States in Developmental Disabilities, a research project sponsored by the University of Colorado, tracks residential costs for adults with intellectual challenges. In 2015, the latest year for which data is available, the national average for residents of institutions with 16 or more beds was $256, 400 per person.

  • Massachusetts spent $287,434 per person
  • Connecticut spent $403,496
  • Rhode Island spent nothing in that category. All those who would be in institutions in Massachusetts or Connecticut live in group homes in Rhode Island, Kane pointed out.

The average cost for group homes with six or fewer residents nationwide was $129,233 in 2015, according to the State of the States.

  • Massachusetts spent $170,682 per person
  • Connecticut spent $172,067 per person
  • Rhode Island spent $114,973 per person                                       

Kane said the average per-person cost in Rhode Island is skewed upward by the state-operated system of group homes. According to the House Fiscal Office, the average per-capita cost for 139 residents of the state operated system is $207,251.

In the privately-operated group homes, however, the state spends about $60,000 a year per person, Kane said. Roughly 1200 individuals live in houses run by private agencies like Access Point RI  and the Fogarty Center.

Controversy Continues over Assessment

Kane turned to a discussion of the Supports Intensity Scale, a controversial assessment methodology that uses lengthy interviews to determine the level of services needed by persons with developmental disabilities on a case-by-case basis. It was introduced in 2011, ostensibly to correct “special considerations” for individual clients that state officials said posed a problem because they were driving up costs, Kane said. 

Ironically, he said, the assessment has prompted many more appeals of individual funding than the number of “special considerations” that had been granted previously.

Some people see the assessment as a problem since it was revised in November, 2016, because it has it has led to larger awards, Kane said.  A House fiscal analysis says the new assessment has added $17 million to developmental disability costs in the first 12 months it was used. 

Kane said service providers believe that the results of the original assessment were “manipulated to back into a budget that didn’t accurately reflect the needs of people.”  

The revised assessment, the Supports Intensity Scale – A, is being used “far more appropriately now,” he said.

The House Fiscal Advisor, Linda Haley, noted a “moratorium” in the use of the SIS-A. The director of the agency responsible for developmental disabilities, Rebecca Boss, explained that it was temporary, to allow officials to review their implementation of the revised assessment. 

A total of 46 errors in funding were corrected (see related article) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals continues to use the assessment for new entrants and for regularly-scheduled re-evaluations of clients. Boss said.

If an appeal includes documentation of changes in a person’s medical or behavioral needs that are likely to be long term, perhaps as part of the aging process, a client will receive a re-assessment with the SIS-A ahead of schedule, added Kerri Zanchi, Director of the Division of Developmental Disabilities.

Kevin Nerney, a spokesman for the Rhode Island Developmental Disabilities Council, discussed several initiatives that are intended to both improve services in compliance with federal law and cut costs over the long term.

But Rhode Island is not there yet, he said.

“We don’t want to destroy one system (of services) before creating a new one,” Nerney said. “We don’t want to leave people behind based on an arbitrary fiscal goal rather than the needs of people.”

He said he knows that some eligible individuals are unable to find services that fit their needs, alluding to an increase in the number of individuals who are receiving only case management  during the last couple of years. That figure jumped from 451 in 2016 to 643 this year.

“On paper, it may look like savings” for the state, Nerney said, but some of those families “are in crisis.”

 

'Day Of Action' Planned At RI State House To Raise Disability Awareness - And Alarms About Budget

By Gina Macris

Developmental Disabilities Awareness Month, celebrated across the nation, will come to the Rhode Island State House in a “Day of Action” Thursday, March 29.

Adults who face intellectual challenges in daily living plan to celebrate their accomplishments. But they and their supporters also want to raise an alarm about the damage they say proposed budget cuts will cause to the services they need to live full lives.

The “Day of Action” is aimed at lobbying legislators over what advocates say is a looming crisis. Late in the afternoon, after the House adjourns, a subcommittee of the House Finance Committee is scheduled to hear Governor Gina Raimondo’s budget proposal.

The budget would eliminate $18.4 million in current costs from the private service system that supports most adults with developmental disabilities in Rhode Island, says Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), sponsor of the “Day of Action. “

On Thursday evening, Advocates in Action will host a meeting in Warwick that will feature adults with developmental disabilities encouraging their peers to speak up for their right to individualized services that is embedded in the Americans With Disabilities Act (ADA).  (Read related article here.) 

The individualized  approach is inherently costlier than the congregate care Rhode Island has depended on in the past in sheltered workshops and day centers. 

But the right to individual choice is mandated by the state’s 2014 Olmstead consent decree with the U.S. Department of Justice. And the judge in the case, John J. McConnell, Jr. of U.S. District Court, has signaled from the bench that he will be watching budget deliberations.

Among service providers, some officials say privately that their agencies are teetering on the brink of insolvency as a result of several years of underfunding in which the state has failed to cover their costs and they’ve exhausted any reserves they might have had.

The budget, if enacted, would be “untenable,” said the CEO of one service agency, who asked not to be identified publicly.

Family members say the issue is not just about the service agencies.

David and Marcia Graves, parents of a woman with cerebral palsy, said in a statement that the spending cuts “will put the emotional and physical well-being of our daughter and others in jeopardy.”

A drastically reduced budget would make the difficult job of recruiting and retaining qualified direct care workers impossible, the Graveses said in a statement released by the CPNRI.

Raimondo’s calculations suggest that the governor’s office and the developmental disabilities agency, BHDDH, are not reading from the same page of figures.

Martin, the executive director of CPNRI, put it another way. She said that Raimondo’s budget, like the proposals of governors before her, does not address a structural deficit in developmental disabilities, instead continuing a cycle of chronic underfunding and deficit spending.

Here are the numbers:   

The developmental disabilities budget the General Assembly enacted last summer for the current fiscal year allows $256.9 million in spending.

 Raimondo would raise current spending to $272.2 million – an increase of $15.3 million to cover a cost overrun. 

For the fiscal year beginning July 1, Raimondo would drop the bottom line to $250.8 million. The difference would be $21.4 million, including $18.4 million that would come from private providers and $3 million that would come from state-operated group homes.

Viewed another way, Raimondo’s bottom line of $250.8 million is $6.1 million less than the currently authorized spending level of $256.9 million.

All the money comes from the federal-state Medicaid program, with the federal government providing a little more than 50 cents on the dollar.

Budget officials who briefed reporters on Governor Raimondo’s overall fiscal proposal in January emphasized her efforts to close a projected $200 million deficit in the next fiscal year while promising that Medicaid recipients, including those with developmental disabilities, will not see a reduction in services. 

The Office of Management and Budget (OMB), which advises the governor, was asked how it approached BHDDH spending as it set a target for the next fiscal year.

OMB “makes adjustments based on estimated growth rates in the cost of providing services,” said a spokeswoman, but she acknowledged that those estimates did not take into account the current, actual costs.

The spokeswoman said that OMB worked from the $256.8 million budget enacted last year for the existing budget cycle and incorporated “personnel and entitlement adjustments,” like a slight increase in the federal reimbursement rate for state Medicaid expenditures, as well as “certain trend growth rates.”

From there, OMB applied a 10 percent reduction, as it has across the board for all state agencies, to deal with the state’s overall projected $200 million deficit, she said. (Raimondo still found money for new programs.)

One hurdle faced by BHDDH in presenting its case for funding that it is not represented at a twice-yearly meeting at which officials grapple with trends in Medicaid spending, even though the department's services are entirely funded by the federal-state program. 

In November and May, the State Budget Director meets with the fiscal advisers of the House and Senate in the caseload estimating conference to reach consensus on the latest Medicaid expenses and provide updated information for budget projections. 

The law setting up the caseload estimating confernce excludes both BHDDH and the Department of Children, Youth, and Families (DCYF), another agency funded by Medicaid. Companion bills pending in the House and Senate would require both BHDDH and DCYF to participate. 

The most recent caseload estimating conference was in early November, about three weeks after BHDDH submitted its budget to OMB. 

At the time, BHDDH had about a year’s experience with a revised assessment method that determines the individualized level of service authorized for adults with developmental disabilities. The result was an added $17 million in developmental disability costs, according to a report of the House fiscal staff.

Raimondo’s budget summary suggests that BHDDH has been reviewing the validity of the assessment. But BHDDH director Rebecca Boss said in an interview in January that “it’s probably a misnomer to call it a validation of the SIS-A.” She referred to the acronym for the assessment, called the Supports Intensity Scale –A.

The American Association on Intellectual and Developmental Disabilities, the developer of the instrument, “have a scientifically rigorous study that this is a valid tool,” Boss said.

“For us, it was validation of our implementation of the SIS-A, not necessarily the tool itself. It’s a validation of our implementation, and that’s probably a better way to say it,” she said.

BHDDH found 46 cases in which the assessment resulted in individual authorizations that were higher than warranted. Boss said those authorizations were corrected, and all the social workers who do the assessments were retrained in how and when to ask supplemental questions that might lead to higher funding.

“We’re not planning to discontinue using the SIS-A,” she said. “We are planning to make sure we are using it correctly.”

In other words, the prime driver of higher per-person costs for developmental disability services is not going away.

And it will take several years before all adults with developmental disabilities  - some 3700 receiving services - have all been assessed using the new SIS-A.

From 2011 until November, 2016, BHDDH had been using the predecessor to the SIS-A, which was enmeshed in controversy, with accusations by families and providers that assessors humiliated them and the state manipulated results to artificially depress funding authorizations. 

Successful appeals of individual funding allocations cost the state more and more money until the supplemental payments reached a total of about $23 million in the last fiscal year.

The U.S. Department of Justice has criticized the way the state used the original SIS in findings that led to the 2014 consent decree. Two years later, in May, 2016,  the SIS figured in a multi-faceted compliance order issued by Judge McConnell.

He said state policy must require all assessments to be conducted “in a manner that is consistent with individuals’ support needs, separate and apart from resource allocations.”

Six months later, the state inaugurated the SIS-A. Martin, the CPNRI director, said her membership tells her the SIS-A still poses some challenges to families, but it is far more accurate than the previous version. 

 

 

 

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

By Gina Macris

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

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

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

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

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

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

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

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

"Logjam Cited In Onset Of Adult Services

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

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

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

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

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

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

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

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

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

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

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

graph on age distribution of applicants.JPG

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

students applying earlier.jpg

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

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

Other Issues Raised By Task Force

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

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

Assessing Individual Needs  

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

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

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

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

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

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

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

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

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

A Call for True Conflict–Free Planning

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Supported Employment At Issue

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

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

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

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

RI Rate Cuts To DD Providers Or Wait Lists For Services Loom Without More Funding For BHDDH

By Gina Macris   

Rhode Islanders with developmental disabilities would face “drastic measures” such as waitlists for services or reductions in the amounts the state pays private organizations providing these supports if their funding agency must resolve a sizeable budget deficit by the end of the fiscal year June 30.

Rebecca Boss                       Photo By Anne Peters

Rebecca Boss                       Photo By Anne Peters

Rebecca Boss, director of the agency, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), reached that conclusion in a Nov. 30  letter to the director of the state budget office and the finance committee chairmen of the House and Senate.

She pledged to keep working  “to minimize the anticipated disruptions and destabilization that would result from such measures on our vulnerable populations.”  In the last several years, the General Assembly has covered BHDDH deficits with supplemental funding.

The letter outlined a corrective action plan for reducing the deficit, an estimated $15.9 million in in state spending, including about $12 million from developmental disabilities programs and nearly $4 million from the Eleanor Slater Hospital. Without a state match, roughly the same amount in federal Medicaid dollars also would evaporate.

The corrective action plan described a variety of cost-cutting initiatives that at best, would address less than half the overall shortfall, but Boss’s letter did not add up the total savings. BHDDH officials were not able to respond immediately to several detailed questions about the corrective action plan. 

Corrective action plans are required whenever a state agency runs a deficit. But the BHDDH plan raises questions about its future ability to comply with a 2014 federal consent decree that requires Rhode Island to integrate adults with developmental disabilities in the community to comply with the Americans With Disabilities Act (ADA).

Integrated services, which require small staff-to-client ratios, are inherently more costly than the segregated, facility-based programming Rhode Island has used in the past, in which one person can keep an eye on larger groups of people gathered in one room.  An over-reliance on sheltered workshops and day centers put Rhode Island in violation of the ADA's integration mandate, which is spelled out in the Olmstead decision of the U.S. Supreme Court, according to findings of the U.S.Department of Justice.

Rhode Island has never been in complete compliance with the incremental integration goals of the consent decree and in the spring of 2016 came close to being held in contempt of court over lack of funding, among other issues. Since then, as long as the state has put additional money and professional expertise into efforts to improve services, it has avoided sanctions.

Most recently, during a U.S. District Court hearing Nov. 30 – the same day Boss turned over her corrective action plan – the judge in the consent decree case  repeatedly brought up his concerns about money to fund the services required by the consent decree. John J. McConnell, Jr. said he would be keeping an eye on the budget process, both at the state and federal levels.

The BHDDH plan proposes returning to the state a $2 million balance in funds that had been allocated to a performance –based supported employment program that responded to a court order to help more adults with developmental disabilities find jobs. In the plan, Boss said that BHDDH would continue to provide funding for supported employment. Anecdotal information from providers and families has indicated that, even with the performance-based program, employment services have not been available to all who wanted them.  

Boss, meanwhile, outlined other cost savings. She said correcting errors in the needs assessments of 46 adults with developmental disabilities will result in $400,000 in savings, once the individual funding authorizations for those persons are reduced.

Because of widespread complaints that the original assessment shortchanged individual needs, resulting in routine awards of supplemental funds, BHDDH adopted an updated version of the standardized interview about a year ago that was said to be more accurate.

The newer assessment contributed to higher per-person costs that are reflected in much of the $12 million projected deficit in developmental disabilities, Boss said. The 46 errors in assessment occurred because interviewers did not correctly utilize a certain group of questions in the new interview process, she said.  

At the start of the current fiscal year in July, with rising costs from the new assessment already apparent, BHDDH imposed stringent health and safety standards for awarding supplemental funds on appeal.

Of the $12 million projected deficit in developmental disabilities, $4 million is related to “various” cost-cutting initiatives in the current fiscal year which BHDDH does not expect to achieve, Boss said.

She did not describe these unachieved savings in any detail, except to attribute $500,000 to the department’s inability to move residents out of three of five state-run group homes that had been scheduled to close. The remaining two homes are special care facilities that are being consolidated and will close, Boss said. She has said such special care facilities do not comply with a new Medicaid Final Rule on Home and Community-Based Services.

In the last quarter of the fiscal year, beginning April 1,  BHDDH plans to cut the daily reimbursement rates for residents of group homes with relatively mild developmental disabilities, those assigned to the lowest two levels ( labeled A and B) of a five-tier funding scale. This measure is expected to save $200,000.

Additionally, BHDDH has a “continuing commitment” to reducing the population of group homes by 110 during the current fiscal year, which would bring an estimated savings of $900,000, Boss said. She did not elaborate.

In Rhode Island, the primary alternative to group homes is shared living, in which a person with a developmental disability lives with a family in a private home.

During the 27 months between July 1, 2015 and Sept. 20, 2017 the number of individuals in shared living increased by 92, according to BHDDH figures, from 268 to 360. The breakdown includes 40 in the fiscal year that ended July 1, 2016 38 in the fiscal year that ended July 1, 2017, and 14 in the first three months of the current budget cycle.

At the Eleanor Slater Hospital, all but $900,000 of the nearly $4 million shortfall can be attributed to salaries and benefits, including $2.1 million in overtime, Boss said.

The hospital has faced numerous problems, most critically a preliminary report from the Joint Commission in September that signaled Eleanor Slater would be denied accreditation because of unsafe facilities. The report prompted an increase in staffing so that patients are checked every five minutes.

BHDDH plans to move patients out of the substandard facilities, but that consolidation is behind schedule.

 

RI BHDDH Running Projected $34.6 Million Deficit; DD Services Account for $26 Million Of Shortfall

By Gina Macris

Rhode Island’s efforts to improve services to adults with developmental disabilities - spurred by ongoing federal court oversight – will result in cost overruns of almost $26 million by next June, the end of the current fiscal year, according to projections from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The projected $26 million shortfall is the largest in recent memory for developmental disability services, which typically have run $4 to 6 million over budget during a fiscal year.

In the first quarter spending report to the State Budget Officer, Thomas Mullaney, Rebecca Boss, the BHDDH director, said there are two main drivers of the projected deficit:

  • Increased costs attributed to an updated assessment for clients of the Division of Developmental Disabilities, the Supports Intensity Scale–A, or SIS-A, which is generally regarded as more accurate than the previous version in capturing individuals’ support needs, particularly for those with complex medical and behavioral issues.
  • An increase in supplemental authorizations that represent successful appeals of funding levels awarded through fiscal calculations made from the results of the original SIS or the SIS-A.  

BHDDH has asked the state Budget Office to consider a supplemental appropriation for the current budget cycle to cover much of the shortfall, with Boss saying the increased spending is consistent with current caseload projections.

But BHDDH also proposes cutting about $5 million from supplemental appropriations before next June 30. Boss has ordered officials to deny requests from individuals with developmental disabilities for supplemental funding, except in emergencies related to health and safety, including the risk of hospitalization. She also made an exception for any “court-ordered services” which may occur.

The order to hold the line on supplemental funds is likely to have widespread impact on individuals and their families, who must make the same request for extra money annually if they believe they have been shortchanged by the SIS or the SIS-A.  Alternatively, they may request a re-assessment.

In her letter to Mullaney, Boss said BHDDH is working to address the current year’s projected deficit and is determining “potential courses of action which would meet client needs, be accountable to regulatory entities, and meet fiscal constraints.”

The Office of Management and Budget is working with BHDDH to “thoroughly review its options,” a spokeswoman for Mullaney said Nov. 9.

BHDDH requested $22 million for supplemental payments in the current budget, according to testimony before the General Assembly last spring.

But in a recent corrective action plan, the department said it authorized over $28.2 million in supplemental payments – more than 10 percent of all payments to private providers - during the fiscal year that ended last June 30. Actual expenditures exceeded $22.3 million.

“The past volume and approval of supplemental authorizations is unsustainable,” BHDDH said.

The plan sets a limit of $18.6 million for supplemental payments in the current budget cycle and reduces the ceiling to $14.4 million in the fiscal year beginning next July 1, with the assumption that the number of requests for supplemental payments will decline as more clients are assessed through the updated SIS-A. 

The corrective action plan also notes that requests for supplemental funds that are denied by BHDDH may be appealed to the Executive Office of Health and Human Services.

The projected $26 million shortfall in the Division of Developmental Disabilities represents the lion’s share of an overall $34.6 million departmental deficit, based on first-quarter spending, which Boss outlined in an Oct. 27 letter to Mullaney, the State Budget Officer.

The state is under pressure from the U.S. District Court to improve the quality of its daytime services for adults with developmental disabilities by moving its system from isolated day centers and sheltered workshops to supported employment at regular jobs paying minimum wage or higher. Rhode Island also must increase the availability of integrated non-work activities. These mandates are spelled out in two agreements with the U.S. Department of Justice, in which the state must correct correct an overreliance on segregated facilities that violates the Americans With Disabilities Act.

The original SIS, accompanied by a $26 million reduction in developmental disability funding, was introduced by BHDDH and the General Assembly in 2011 as an equitable way of distributing available resources, although advocates complained that it was nothing more than a device to control costs, at the expense of some of Rhode Island’s most vulnerable citizens.

In succeeding years, that dollar amount was restored, but the service system was fundamentally altered, resulting in wage cuts, higher worker turnover, and a dependence on lower–cost services in segregated facilities that can be supervised with fewer staff.  The U.S. Department of Justice began its investigation into these facilities - sheltered workshops and day centers - in 2013.

On an individual basis, persons with developmental disabilities, their families, and service providers routinely appealed the funding awarded through the SIS, and at one point supplemental payments became routine.

In the meantime, there were were so many complaints about the SIS that the department ultimately decided to shift to the SIS-A.

But 13 months ago, when BHDDH submitted projections that ultimately went into the current budget, it had no experience with the SIS-A. The revised assessment was introduced in November, 2016. By springtime of this year, however, Boss had enough data to tell legislators that the SIS-A was resulting in higher per-person funding allocations. And she reported that the overall numbers of individuals using  developmental disability services was on the rise.

For the future, Boss envisioned a shift away from supplemental payments as the revised assessment tool better responds to individuals’ funding needs.

Of the overall $34.6 million projected BHDDH deficit, nearly $8.7 million can be attributed to staffing and overtime increases at the Eleanor Slater Hospital for stepped-up patient monitoring in light of a recent warning that the facility may lose accreditation because aging buildings pose too many risks that patients may harm themselves. A risk assessment for the Eleanor Slater Hospital is currently underway, and the results will inform a request for supplemental funding to remedy concerns of the hospital accrediting agency, the Joint Commission, Boss said.

Click here for the BHDDH first quarter spending report.

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

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

By Gina Macris

During a public forum on Rhode Island’s developmental disability services Aug. 8, Deanne Gagne talked about the importance of personal choice in improving quality of life, for herself and others. 

“It’s really about the person in the center who’s driving the vehicle,” not the service system defining the options, said Gagne, a spokeswoman for Advocates in Action, a non-profit educational organization which encourages adults with developmental disabilities to speak up for themselves.

For Gagne on that day, personal choice turned out to be about the spontaneity of doing somethingmost adults take for granted: making a lunch date.

After the meeting, Gagne connected with an old friend who also attended the forum at the Coventry Community Center.

Because Gagne controls the way she uses her service dollars, she did not need to discuss with anyone how she and her wheelchair would get to and from the chosen restaurant.  Gagne’s assistant simply pulled Gagne’s cell phone out of the bag that hangs across the back of her chair and handed it to Gagne, who marked the date, time and place in her calendar and handed back the phone. That was that.

As a speaker during the forum, Gagne summarized the message of recent public sessions hosted by  Advocates in Action, in collaboration with the state and the Sherlock Center on Disabilities at Rhode Island College, on thinking “outside the system” or “outside the box” in planning for the future.

“It’s back to basics,” she said. “What do you want to do with your life, and what do you need to make that happen?”

Both a 2014 consent decree and a new Medicaid rule on Home and Community Based Services (HCBS) put personal choice at the heart of mandated changes in the approach to services. All developmental disability services in Rhode Island are funded by the federal-state Medicaid program.

One parent who has attended a recent Advocates In Action session on personal choice, or “person-centered thinking”, said there’s a long way to go before such a change becomes everyday reality.


“It seems like a giant step to get from where we are now to where we’re going,” said Greg Mroczek, who has two adult children with developmental disabilities.

None of the developmental disability officials who hosted the forum disagreed with him.

Zanchi           

Zanchi           

But Kerri Zanchi, the director of the Division of Developmental Disabilities, and her administrative team made it clear that they want the public to participate in creating a new system of services in a much more active way than is the norm when bureaucracies adopt change.

Kevin Savage, director of licensing, who leads a continuing effort to rewrite developmental disability regulations, said, “We want to have regulations that are meaningful to participants and their families.” The committee rewriting the regulations, which began working in the spring, includes representation from consumers and family members. Savage said a draft of the proposed regulations should be completed in September and released for public comment later in the fall.

Also on Aug. 8, the Division put out a new call for individuals interested in serving on an external quality improvement advisory council.

The advisory council would complement an internal quality improvement committee as part of a broad effort intended to make sure services are faithful to the requirements of the consent decree and Medicaid’s Home and Community Based Rule. 

Anne LeClerc, Associate Director of Program Performance, said she would field inquiries about the quality improvement advisory council. She may be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Zanchi, meanwhile, yielded the floor to representatives of a fledgling effort to revitalize family advocacy called Rhode Island FORCE (Families Organized for Reform, Change and Empowerment), an initiative of the Rhode Island Developmental Disabilities Council.

Semonelli

Semonelli

Chris Semonelli of Middletown, a leader of the group, said it aims to become a springboard for legislative advocacy, starting with an exchange of ideas in the fall among those affected by the developmental disability service system. A date for the event, entitled “Coffee and Cafe Conversation,” has yet to be announced.

The Developmental Disabilities Council plans to support the family advocacy group for up to five years, until it can spin off on its own, according to Kevin Nerney, a council spokesman. Anyone seeking more information may contact him at kevinnerney@riddcouncil.org or 401-737-1238.

Francoise Porch, who has a daughter with developmental disabilities, touched on a long-standing problem affecting both the quality and quantity of available services: depressed wages.

“Direct care staff can’t make a living working with our children,” she said.

The General Assembly allocated $6.1 million for wage increases in the budget for the current fiscal year, which Governor Gina Raimondo signed into law Aug. 3 after the House and the Senate resolved an impasse over Speaker Nicholas Mattiello’s car tax relief plan, which emerged intact.

Although the language of the budget says the raises are effective July 1, the fiscal analyst for developmental disabilities, Adam Brusseau, could not say during the forum exactly when workers might see retroactive checks.

The extra funding is expected to add an average of about 56 cents an hour to paychecks – before taxes – but the precise amount will vary, depending on the employee benefits offered by private agencies under contract with the state to provide direct services.

The latest raise marks the second consecutive budget increase for direct care workers and the first in a five-year drive to hike salaries to $15 an hour.

For high school special education students anticipating a shift to adult services, “there seems to be a logjam” when it comes to families trying to figure out how many service dollars they will have and how far the money will go, according to Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College.

Rosenbaum

Rosenbaum

Zanchi said the Division of Developmental Disabilities aims to administer assessments that are used in determining individual budgets a year before an applicant leaves high school and needs adult services.  But Rosenbaum said that based on her contact with families of young adults, a year does not appear to be long enough. 

She elaborated: after the assessment, called the Supports Intensity Scale, families must wait a month or more for the results. Only then can parents explore the offerings of various agencies.  They may settle on one agency, only to be told that the agency is not accepting new clients with their son or daughter’s particular need. Then, when families decide to design an individualized program themselves, they must begin planning all over again.

“A year is not enough,” Rosenbaum said.

Zanchi said she will look into the problem.

RI Employment First Task Force Seeks Data To Compare DD Eligibility Policy and Practice

By Gina Macris

A year ago, Rhode Island adopted a policy allowing students with developmental disabilities at least 12 months before they left high school to plan their entry into the adult world.

Now, the Employment First Task Force wants to know whether the policy and the reality are one and the same.

Word of mouth among special education professionals is that in some cases, the families of students notified they will be eligible for adult services from the state Division of Developmental Disabilities nevertheless aren’t given a budget in enough time to make a good adult service plan before they leave school.

Claire Rosenbaum, the Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, raised the issue at the most recent meeting of the Employment First Task Force July 18.

The task force chairman, Kevin Nerney, of the Rhode Island Developmental Disabilities Council, said he would ask state developmental disability officials in writing to come to the group’s next meeting with data showing how closely the state is adhering to its “eligibility by 17” policy.

The state established the policy in July, 2016, in response to a U.S. District Court order which said it must eliminate service gaps for eligible young adults once they leave high school. Judge John J. McConnell, Jr. had been presented with evidence that eligible young adults sat at home doing nothing for weeks or months after they left high school because adult services were not in place.

Young adults are one of four categories of individuals with developmental disabilities who are protected by a 2014 consent decree requiring the state to move away from sheltered workshops and non-work programs akin to day care toward purposeful activities in the community, with an emphasis on jobs paying at least minimum wage. 

The consent decree envisioned the Employment First Task Force as a group representative of adults with developmental disabilities, families, and community organizations that could serve as a bridge between the public and state government.

The eligibility policy says that, unless there is a need for extra documentation, students should be notified within 30 days of filing applications whether they will receive adult services. If they are eligible, they should be scheduled for an assessment of need, called the Supports Intensity Scale (SIS, within 30 days. And 30 days after the assessment, they should be notified of the individual funding allocations they have received, according to the policy.

A spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said July 20 that "it will take some time" to gather answers to detailed questions about adherence to the timelines in the "eligibility by 17"  policy and additional questions about the SIS.

Questions raised at Tuesday’s meeting about the eligibility timeline overlapped with queries contained in a task force report to Charles Moseley, an independent monitor appointed by the court to oversee  implementation of the consent decree.

In the report, approved by consensus Tuesday, the task force recommends that Moseley collect detailed information on various aspects of the application and funding process and appeals of decisions made by the state. The task force previously has requested application and eligibility data from the state but has not received it, according to the report.

Other sections of the report covered a number of topics, including “person-centered planning,” an individualized approach to arranging services that incorporates a range of personal choices that go far beyond menus of activities that may offered by one provider or another.

Moseley has made it clear he believes person-centered planning is the foundation for compliance with the consent decree,

Nerney, the task force chairman, said in the group's report that he believes such truly individualized planning “could have a greater positive effect on people’s lives than the consent decree itself. “

At the same time, “you can’t destabilize the current provider system while building a new one,” Nerney warned.

Rosenbaum said that truly individualized, or “person-centered” planning, a comprehensive process requiring a skilled facilitator, can’t be done properly with the amount of money available in the state’s developmental disability system.

The next meeting of the Employment First Task Force, open to the public, has been set for Aug. 8 at 2 p.m. at the Community Provider Network of RI, 110 Jefferson Blvd., Warwick. It will adjourn at 3 p.m. to avoid any conflict with the quarterly public forum sponsored by the state Division of Developmental Disabilities. That forum runs from 4 to 6 p.m. at the Coventry Department of Human Services and Senior Center, 50 Wood St., Coventry.

RI Consent Decree Task Force Wants Feds To Look At Accuracy Of Assessments Used In DD Funding

By Gina Macris

This article has been updated.*

Seven months after Rhode Island state social workers were retrained to better administer a questionnaire used to determine Medicaid funding for adults with developmental disabilities, signs have emerged that not all the interviewers may be conforming to the highly scripted assessment process.

On June 13, the chairman of the Employment First Task Force said the group needs more comprehensive information about any continuing problems with the assessment, the Supports Intensity Scale (SIS). He said he will make a request in writing to the U.S. Department of Justice and a federal court monitor, asking them to look into the situation.

Rhode Island is in the fourth year of implementation of a 2014 federal consent decree asserting the rights of adults with developmental disabilities under provisions of the Americans With Disabilities Act to obtain the services they need to secure jobs and enjoy non-work opportunities in the community.

The consent decree is “very clear” on those rights, said the federal court monitor, Charles Moseley, who listened into the meeting in a conference call.

Moseley said he was “disturbed” to hear an account of a SIS interviewer who said that because a young man was employed, even part time, he could not have the extensive behavioral and medical supports that family members and the service providers said the man needed. In fact, without those supports, the young man could not keep his job.  The task force member who addressed Moseley by telephone in the meeting later asked not to be identified.

Another task force member, Claire Rosenbaum, Adult Supports Coordinator at the Sherlock Center on Disabilities at Rhode Island College, recalled two SIS interviews she has attended since the social workers administering them were re-trained. One was done very well. In the other, the SIS supervisor corrected the interviewer twice.

For example, an interviewer may ask whether certain behavioral problems occur, or whether they have occurred in the last year. But Rosenbaum indicated that the proper phrasing for the SIS is to ask what supports are necessary to prevent those behavioral problems.

The latter approach acknowledges the impact of existing supports in helping adults with developmental disabilities enjoy a better quality of life, something parents and providers had routinely complained was missing from the SIS before the interviewers were retrained.

*(On June 15, Claire Rosenbaum said her comments were not intended as criticism of the SIS interviewers but to make the point that the retraining of interviewers was followed up with supervisory coaching as reinforcement. The two SIS interviews she attended were appropriately administered, she said.  She said her comments, while intended to be positive, did not preclude the possibility that an interviewer or two may not be immediately absorbing the training and coaching provided).

SIS Has History of Controversy in RI

The way Rhode Island uses the SIS to establish funding has been criticized both by the monitor and the DOJ since 2014, when Justice Department lawyers found that there was at least the appearance of a conflict of interest because the agency which administers the questionnaire also allocates individual funding.

Since then, the fiscal arm of the agency which administers the SIS, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) has been transferred to the Executive Office of Health and Human Services (EOHHS).

But Kevin Nerney, the Task Force chairman, said that to the average Rhode Islander, “the state is the state.”  Task Force members floated the idea of having a non-state entity administer the SIS assessment.  

The American Association of Intellectual and Developmental Disabilities, (AAIDD), which developed the SIS, has urged states to avoid even the appearance of a conflict by making a clear separation, or firewall, between the actual interview and the allocation process.  

A U.S. District Court order issued in May, 2016, required the state to change its policy to specify that the  scores on the SIS will be “consistent with individuals’ support needs, separate and apart from resource allocation considerations.” 

Moseley, the monitor, in reporting to Judge John J. McConnell, Jr., earlier this year, the monitor, Moseley, took that idea a step further. In conjunction with bringing greater individualization to supports for adults with developmental disabilities, he has ordered the state to give him quarterly progress reports as it works toward changing its approach to determining needs and funding.  Instead of translating SIS scores into one of five funding levels, as it does now, the state should use the interview results to first draw up individual programs of support. Only then should it apply funding, according to the model envisioned by the monitor.

Meanwhile, Nerney, the Task Force chairman, said outside the Tuesday meeting that the group has repeatedly asked BHDDH over the past two years – without success - for the number of appeals filed by providers or family members contesting funding levels resulting from the SIS.

While that number has not been made public, state Sen. Louis DiPalma, D-Middletown, disclosed in a Senate Finance Committee hearing in April that the appeals generate a total of $21.5 million to $22 million a year in supplemental payments above and beyond the levels determined by the SIS. That amounts to about 10 percent of all payments made to the private agencies that provide most of the services.

Ten percent is too high, DiPalma said, urging BHDDH officials to rework the way they use the SIS.

Consent Decree Allows Exceptions to 'Employment First'

The Task Force also discussed various approaches to developing a variance process under provisions of the consent decree for individuals with developmental disabilities who can’t work or don’t want to work because they fear the challenges of the regular employment.  Language for one or more kinds of variances or exceptions is being drafted, task members reported.

In conjunction with an interim settlement between the City of Providence and the DOJ in 2013 and the subsequent statewide agreement in 2014, the state has adopted an “Employment First” policy which assumes that adults with developmental disabilities can work at regular jobs, with support.

This policy generally has been welcomed by young people, particularly those who have had internships as part of their special education programs in high school and looked forward to working as adults. 

But that reaction has not been universal.  After the policy was adopted in 2013, BHDDH abruptly closed most sheltered workshops without having any plan in place to gradually acclimate those clients to community-based services. The move generated a wave of anger from families whose loved ones had enjoyed the social aspect of the workshops and took pride in their paychecks, even if they were a fraction of the minimum wage. 

Since Governor Gina Raimondo beefed up the state’s response to the consent decree in 2016, various high-ranking state officials have made public assurances that no one will be forced to work if they don’t want to or are unable, contrary to what some families say they have heard from rank-and-file employees in the developmental disability system. 

In a task force discussion on Tuesday of what a variance to the “Employment First” policy might look like. Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, said she understands that some families are turning to segregated adult day care programs for their loved ones that are outside the system licensed by BHDDH. 

These adult programs, licensed by the Department of Health, may take private payments or federal Medicaid funding, according to anecdotal remarks by various task force members.

Moseley, the monitor, said that if Medicaid funding is involved, federal regulations emphasizing community-based services, similar to those of the consent decree, would apply. Both the consent decree and Medicaid regulations governing Home and Community Based Services (HCBS) derive their authority from the 1999 Olmstead decision of the U.S. Supreme Court. The High Court said that individuals with disabilities must be offered services in the least restrictive environment that is therapeutically appropriate, and that environment is presumed to be the community.

Kiernan O’Donnell, co-president of the Rhode Island Association of People Supporting Employment First, said that if families had more information, they wouldn’t be going to segregated programs.

The Task Force, meanwhile, discussed the importance of planning around the individual needs of a particular person. While the principal goal may be employment for one person, it may be health for another, said Deb Kney, director of Advocates in Action.

Planning is a “process. It’s not a form” for checking boxes, she said. Others agreed.

The Employment First Task Force was created by the 2014 Consent Decree to serve as a bridge between the community and state government, with membership drawn from community agencies serving adults and teenagers with developmental disabilities, those who receive services and advocate for themselves, and families. Nerney, the chairman, represents the Rhode Island Developmental Disabilities Council.

RI Proposes E-Records For DD System That Raise Questions About Consent Decree Compliance

By Gina Macris

For the last five-and-a-half months, Rhode Island has been considering eight proposals for an electronic case management system to keep track of services for adults with developmental disabilities.

In part, the electronic system would satisfy demands for up-to-date information so that federal officials could better gauge the state’s compliance with a 2014 consent decree requiring it to shift to community-based daytime services to comply with provisions of the Americans With Disabilities Act.

But the solicitation also indicates that the design of the electronic case management system could conflict with implementation of other requirements of the consent decree, which call for individualization of services and a more flexible approach to delivering them.

Among the vendors submitting proposals is Deloitte Consulting, the company involved in the chaotic rollout of a statewide public assistance benefits computer system known as the Unified Health Infrastructure Project (UHIP), which went live last September. 

At last count, more than 10,000 individuals, which include those with disabilities, are experiencing difficulties with food stamps and other public assistance and medical benefits, according to state officials. And UHIP has contributed to confusion about caseload estimates, used by policy makers to calculate demands on the budget that begins July 1.

Deloitte and the state are still trying to fix UHIP and are negotiating a financial settlement for the $364 million project, although the company recently gave the state a $27 million credit, primarily to cover the cost of re-hiring workers previously let go to help de-bug the system.

The state is appealing a federal fine of $805,197 over the implementation of the project, and the U.S. Attorney’s Office is investigating separate allegations that the federal-state Medicaid program was billed for services that were not provided in connection with the UHIP rollout.

The language of the 116-page request for proposals concerning  the developmental disability program, issued last fall,  indicates that the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) would conduct business as usual in its funding and delivery of services in two key areas:

  • The use of a mathematical formula to translate the results of a standardized needs assessment called the Supports Intensity Scale (SIS) into one of five levels of funding, which in turn would define the scope of services, or “service packages.”
  • The continuation of a fee-for-service billing system for private providers, which pays out only when a service is provided face-to-face, in 15-minute increments during the day, and in 24-hour segments for residential programs, with rates subject to change on a quarterly basis.

The solicitation remains active even as the Division of Developmental Disabilities has signaled it is gearing up for an overhaul of existing regulations to comply with the consent decree. And in a report filed with the U.S. District Court in April, the state agreed to explore new approaches to funding to follow-up on statistics that showed at least one third of private agencies don’t have the ability to expand the kinds of services the consent decree demands.

The independent federal court monitor who is overseeing implementation of the consent decree, Charles Moseley, has said that funding must respond to the individual’s “goals and preferences” as expressed in an individual support plan.

In other words, the money should follow the person, rather than the other way around, as is currently the case.

During the month of May, the Division of Developmental Disabilities and the Sherlock Center on Disabilities at Rhode Island College have invited the public to attend presentations on the central idea behind personalizing services, or "person-centered" thinking; the notion that individuals with disabilities should have more control over their lives.

The regulatory overhaul will be based on that personalized approach, with families, consumers, and providers participating in the rule-writing, Kerri Zanchi, the division director, said at a recent public forum. 

Asked after the meeting how how changes in practice brought about by the new regulations would be funded, Zanchi said, “When we figure out what it (the service system) would look like, then we need to figure out the funding for it.”

The consent decree, meanwhile, also criticizes the fee-for-service reimbursement model for private providers as insufficiently flexible to accomplish the its goals, which focus on individualized community-based supports for jobs and leisure activities.

In response, BHDDH has established a pilot program for supported employment, which provides bonuses for staff training, job placement, and job retention. It has resulted in 40 new jobs since January, according to a BHDDH official.

But in light of the recent survey indicating gaps in providers’ ability to take on new clients, BHDDH has agreed to take a deeper look at funding.

Through a BHDDH spokeswoman, state officials declined to comment on the solicitation for proposals while bids are under evaluation. The eight bids were opened last Nov. 29, according to the website of the state purchasing office.

The request for proposals appears to respond, at least in part, to complaints about data collection expressed by both Moseley, the consent decree monitor, and the U.S. Department of Justice.

Moseley has said the information was so inadequate that it was impossible to tell whether the state was meeting employment targets and other requirements.  Just a year ago, state officials were struggling to come up with an accurate count of the total number of adults with developmental disabilities who were protected by the agreement.

Since then, the state has adopted a work-around to the existing system that can respond to specific queries from the monitor or the U.S. Department of Justice, but not on a real-time basis. The patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College. 

The budget for the electronic case management system has not been made public. The request for proposals (RFP) anticipated an initial three-year contract period beginning March 1.

Asked about the apparent delay, the BHDDH spokeswoman, Jenna Mackevich, said in an email that “it’s important that the agency take the time necessary to thoroughly evaluate proposals and conduct its due diligence during the purchasing process. “

During the evaluation period, the state also has allowed the expiration of a 120-day ban on vendors changing their proposals, which is spelled out in the RFP. The RFP said the state would consider not only price but various aspects of functionality in the proposals as part of its evaluation.  Vendors would be required to demonstrate their products.

To keep costs down, the state is seeking “off-the-shelf” software with customization not to exceed 15 percent. 

According to the RFP, the new electronic case management system would computerize all record-keeping for the developmental disability service system, allowing access by families, providers, and BHDDH staff for multiple purposes.

Besides Deloitte, the vendors are Consilience Software, of Texas;  Eccovia Solutions, Inc., of Utah; FELCOM, Inc., of Maryland;  FOOTHOLD, Inc. of New York; Mediware, of Virginia; Netsmart Technologies, Inc., of Kansas; and Therap Services, Inc., of Connecticut.

RI DD Service Providers Could Do Same Job for 13 Percent Less Money, Said 2011 Memo To Assembly

By Gina Macris

This article has been updated.

In a single day in 2011, the Rhode Island General Assembly slashed about $26.5 million, or 12.7 percent, from payments to private agencies which care for adults with developmental disabilities, some of the state’s most vulnerable citizens.

The massive cutback sent the privately-run developmental disability service system into a tailspin from which it has not yet recovered, even though the dollar amount has been restored.

Documents obtained by Developmental Disability News through public records requests indicate that the budget cutback was based on an unsupported assumption that the private agencies could uniformly deliver the same level of service with far less money.

Moreover, the records show how Project Sustainability, a set of regulations designed to assess the needs of persons with developmental disabilities and assign them a dollar value for services, seemed to function instead as an attempt to control spending – albeit with questionable success.

Today the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) spends more than $21 million a year to “supplement” funding authorizations for individual clients made through Project Sustainability. The supplemental payments amount to about ten percent of all the reimbursements the state makes to the private agencies. Much of the supplemental funding occurs when families and providers appeal the funding determinations successfully, making the case that the original authorizations were inadequate to provide needed services.

A spokesman for House Speaker Nicholas Mattiello defends Project Sustainability, saying that it’s brought accountability to disabilities spending.

Larry Berman said that “Project Sustainability changed a system that did not have a consistent payment model, could not provide information about what services were being provided or in what setting, and if any services were actually provided. It created a new billing system that could account for that.”

“All providers are paid uniform rates for the same services,” he said. Previously, each agency negotiated with the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.) a monthly stipend for a bundle of services for each client.

Since 2011, the General Assembly has added $47 million to services for adults with developmental disabilities, Berman said.

Berman rejected the notion that the General Assembly contributed to conditions which led to a 2014 consent decree with the U.S. Department of Justice and ten years of federal oversight of the state’s developmental disability system, which ends in 2024. 

Findings of the U.S. Department of Justice

In findings that led to the consent decree between the state and federal government, however, the DOJ linked Project Sustainability with violations of the Americans With Disabilities Act (ADA).

It said Project Sustainability restricted individuals’ access to regular jobs and non-work activities in the community – opportunities for choice that are guaranteed under Title II of the ADA.  The U.S. Supreme Court re-affirmed Title II in its 1999 Olmstead decision, saying that individuals with all types of disabilities are entitled to receive services in the least restrictive environment that is therapeutically appropriate. And that environment is presumed to be the community.

In its findings, the DOJ noted that the “precipitous state budget cuts in 2011” exacerbated the problem of retaining qualified staff – a problem that today is described by providers as a “crisis”, despite an incremental pay raise to direct-care workers adopted in the current budget. Workers would get a second small raise in the next fiscal year, according to the budget proposal of Governor Gina Raimondo.

RI Allowed Less Money Than Provider Costs

To understand how the BHDDH budgeting process got more than $20 million off course, a history of Project Sustainability is in order.

In 2011, then-Governor Lincoln Chafee recommended $10 million to $12 million in cuts to developmental disability services, but the leadership of the General Assembly wanted bigger reductions. It first sought to limit eligibility, but backed off when an outside healthcare consultant under contract to BHDDH advised against it, according to a memo obtained through a public records request.

The consultant, Burns & Associates, said restricting eligibility would probably violate the federal “maintenance of effort” requirement for federal Medicaid funding and would not be approved by the Centers for Medicaid and Medicare Services.  All developmental disability services are funded through the federal-state Medicaid program.

Five days after that opinion, dated May 26, 2011, BHDDH sent the General Assembly a memo describing a “methodology” for steep cuts to dozens of reimbursement rates, most of them between 17 and 19 percent below a target rate that was established after a year’s research that included data from the providers themselves on their costs. In undercutting that “target” rate, BHDDH said that the state could not afford to spend more, the memo said.

“We did not reduce our assumption for the level of staffing hours required to serve individuals,” the memo said.

“In other words, we are forcing the providers to stretch their dollars without compromising the level of services to individuals,” said the memo.

Craig Stenning, who was BHDDH director at the time, recently declined all comment for this article and ended a phone conversation with a reporter before any questions could be asked.

The General Assembly doubled Chafee’s recommended reductions in reimbursements on the basis of a  last-minute floor amendment in the House, after the public had been cleared from the gallery of the chamber, early the morning of July 1, the final day of the General Assembly’s regular session that year. The budgeted reduction was $24.5 million, but the actual cut eventually totaled $26.5 million, according to the state’s figures on actual spending.

The vote also established Project Sustainability, the bureaucratic process - still largely in place today – that the DOJ later found violated the civil rights of clients of BHDDH. The primary elements:

  • The Supports Intensity Scale (SIS), a standardized assessment designed to determine needed for an individual to accomplish his or her goalls.
  •  A formula or algorithm developed by Burns & Associates to assign funding to individuals according to one of five different levels or tiers, designated by letters A through E. 
  • A billing system that requires providers to document face-to-face time with clients in 15-minute increments in order for them to be reimbursed for day services.  

Since 2010,  BHDDH and the Executive Office of Human Services (EOHHS) have paid Burns & Associates about $1.4 million to introduce Project Sustainability, develop the equation, or algorithm, and monitor its use.

DOJ Cited "Seeming Conflict of Interest"

In challenging the state’s treatment of persons with disabilities in 2014, the Department of Justice found, at a minimum, “a seeming conflict of interest” in the way Rhode Island used the SIS as a “resource allocation tool”, because BHDDH both administered the assessment and determined the budgets.

The DOJ findings continued:

“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.”

“Numerous persons stated that this lack of neutrality, and apparent tension between the need to assess the full spectrum of an individual’s support needs and state efforts to cut costs, has negatively. impacted the resources individually allocated to people with I/DD (intellectual or developmental disabilities “Further,” the DOJ said, “we received considerable feedback from parents, family members, advocates, direct support staff, and providers that the individuals administering the SIS lack the training, qualification, or experience working with individuals with I/DD necessary to make resource allocation decisions on behalf of individuals with I/DD.”  

The DOJ also said that “we find that several formative practical and procedural barriers exist under Project Sustainability that contribute to individuals’ inability to access the resources, including funding allocations, that they need to purchase services like supported employment and integrated day planning.”

And the department found inflexibility in the requirement that workers be “face to face” with clients for their employers to receive reimbursement for services. Through the consent decree, the “face to face” provision has been eliminated in a pilot program to help adults with developmental disabilities seek regular jobs in the community.

Families and service providers routinely appealed adverse funding allocations, and many of them were successful, resulting in supplemental payments for a year. But the following year, they received notice that the supplemental payments would be withdrawn, and the appeal process began all over again.

Until Stenning left office in 2015, parents and service providers were denied copies of the actual SIS scores. Some parents have said BHDDH officials told them the questionnaires, developed by the American Association on Intellectual and Developmental Disabilities (AAIDD), could not be released because they contained private propriety information.

That’s changed. Today developmental disability officials have acknowledged that the completed questionnaires are personal health care records that must be made available to patients or their guardians, according to federal law. BHDDH has never released the funding formula. 

Parents also have complained publicly that social workers administering the interviews either argued with them and with providers about their responses or that they wrote down scores different from the ones offered by family members and providers.

AAIDD Defends SIS

Margaret Nygren, executive director of AAIDD,  which created the SIS, said it is a “well-established, scientifically valid, replicable tool” designed to measure support needs, and those who administer it must complete a “very rigorous training program” that includes an “annual recheck to make sure they are not drifting what we are training them to do.”

“It is certainly possible someone could get through the training and not apply what they’ve learned,” she said. “It’s not the kind of thing we’d like to see happen,” Nygren said. But she suggested it would be the rare exception rather than the rule.

In December, 2015, Wayne Hannon, then Deputy Secretary of EOHHS for Administration, tried to get a handle on the amount of money that BHDDH spent on supplemental payments outside the regular funding authorization process. These supplemental payments are not reflected as a separate line item in the budget.

Hannon asked Burns & Associates to figure out how much money the state could save if all the supplemental payments were eliminated. In a nine-page memo, the consultants concluded that the state could save a total of $13 million if all the supplemental payments were curtailed, but they stopped short of recommending such a move, saying they did not have enough information to know if the supplements were in fact warranted or used.

In the analysis that led to the conclusion, Burns & Associates' figures suggested there was a great deal of variability in SIS scores, even though the needs of particular individuals usually can be expected to remain fairly constant over time. For example, about 40 percent of those who had been assessed twice over a three-year period, or 726 of 1,798 individuals, had a change in funding levels the second time around, according to the consultants. In a smaller sample of 599 individuals, Burns & Associates said about 54 percent of funding authorizations decreased and the remainder increased.

AAIDD’s Nygren, who saw the memo, said the changes have to do with the funding algorithm created by the state, not the SIS itself. A small change in SIS scores could result in a change in funding, depending on how the formula is constructed, she said. BHDDH has not responded to requests for the formula. 

SIS And Funding Formula Updated    

The extent to which re-assessments generated changes in funding authorizations, whether up or down, raised eyebrows when they came to the attention of state developmental disability officials in the summer of 2016. 

At the time, the state had just promulgated a new policy declaring that the SIS would be administered solely on the basis of an individual’s need for support, in response to a federal court order that had been issued to enforce the consent decree.

 Meanwhile, Jane Gallivan, an experienced administrator of developmental disability services, had just been hired as a consultant and interim director of developmental disabilities. 

 Gallivan later recommended the state switch to an updated version of the SIS, which she said she believed would be more accurate in capturing clients’ needs, particularly for those requiring behavioral and medical supports. Burns & Associates also was re-hired to re-tool the funding formula.

The conversion to the so-called SIS-A included the retraining of all the interviewers and was launched in November, 2016, in the hope that the number of appeals – and supplemental payments – will come down.  Initial reports on the results of the SIS-A indicate that overall, they result in higher funding authorizations, according to developmental disability officials.

In the meantime, the current BHDDH budget allows for $18.5 million for supplemental payments, but in the first three quarters of the fiscal year the department went $3 million over that authorization, according to a recent House fiscal presentation. And Governor Raimondo seeks $22 million in supplemental payments in the fiscal year beginning July 1.

Taking in these numbers on overruns in the supplemental payments at a recent Senate Finance Committee hearing, Sen. Louis DiPalma told BHDDH officials to “look at the equation” that assigns funding authorizations to adults with developmental disabilities.

DiPalma and Rep. Teresa A. Tanzi, D-Narragansett and South Kingstown, have sponsored companion legislation that would make developmental disability caseload part of the semi-annual caseload estimating conference, used by both the executive and legislative branches of government to gauge expenses for Medicaid and public assistance.

DiPalma also has sponsored a separate bill that would require the SIS to be administered by an independent third party to avoid even the appearance of a conflict of interest.

AAIDD recommends that states take steps to ensure “conflict-free” administration of the SIS, a point noted by the DOJ in its 2014 findings.

Court Monitor Has A Say

The independent court monitor in the implementation of the consent decree would go a step further and uncouple the SIS from the funding mechanism altogether.

The monitor’s reports to the U.S. District Court say the SIS should be used for “person-centered planning,” a bedrock principle of the consent decree, which puts the focus on the needs and preferences of individuals, rather than trying to fit their services into a pre-determined menu of choices, as is now the case.

The monitor, Charles Moseley has said the SIS should be used as a guide for developing an individualized program of services, and then funding should be applied to deliver those services. Currently, the funding defines the scope of the services.

Moseley has put the state on a quarterly schedule of progress reports toward implementing “person-centered planning.”                

The changes have as-yet undefined budget implications for the state in the future.

Tom Kane, CEO of AccessPoint RI, a provider, explained to a subcommittee of the House Finance Committee in a recent hearing that it will be inherently more expensive to provide services in the community than it has been historically to have one person working with ten clients in a room in a sheltered workshop or day program.

There is now only slightly more in the private developmental disability system than there was in 2010, he said.  (The General Assembly has approved $218.3 million in reimbursements to private providers for the current budget cycle, or $10.2 million more than was spent in the fiscal year that ended June 30, 2010, according to state budget figures.)

“There are more people in the system” and “the requirements of the consent decree are far more extensive than the kind of supports we were providing,”  Kane said.

He said he’s “definitely in favor” of Governor Gina Raimondo’s budget proposal, which would add $10 million to the system over the next 15 months, but he believes the available funding is only half of what is needed to stabilize private provider agencies and ensuring their clients get the “services they deserve and require.”

 

 

RI Senate Finance Hearing Highlights Cost Overruns, Challenges, in DD Budgets

By Gina Macris 

Cost overruns are a recurring theme for Rhode Island’s Division of Developmental Disabilities, with expenses for mandated services running  about $4.4 million over budget in the current fiscal year, while $6 million in projected savings group home-related costs  are proving elusive. 

Overall, Governor Gina Raimondo seeks to close out the current fiscal year with a total of $250.6 million in developmental disabilities funding and requests $256.7 million for the fiscal year beginning July 1. Taken together, the $4.4 million increase she has requested in current spending and the proposed increase of nearly $6.1 million for the next fiscal year run almost $10.5 million more than the existing budget authorized by the General Assembly - $246.2 million.   

At a budget hearing April 4, members of the Senate Finance Committee seemed to understand the challenges faced by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), but Sen. Louis DiPalma, D-Middletown, still asked officials for more realistic budget figures in the future.

One case in point was $100,000 in actual savings in costs related to group homes, rather than the $2.6 million cut in state revenue that originally had been projected during the current fiscal year. 

The savings are associated with a shift in residential care from group homes to less costly shared living arrangements in private homes scattered throughout the state, a change that is driven both by budgetary constraints and federal Medicaid rules.

In April of 2016, BHDDH said it would move a total of 100 individuals with developmental disabilities from group homes to shared living by the end of the fiscal year June 30, but it achieved only 27 transfers, DiPalma said. 

For the current fiscal year, the goal is 66 moves. Noting the $2.5 million gap between projected and actual savings, DiPalma said he would have recommended a target of 45 transfers. 

But “the budget is what it is,” he said.

“If you want to move someone, they have to say yes,” DiPalma said. “If they say no, they stay where they are.”

Rebecca Boss, the acting BHDDH director, said, “you are right about the challenges.”

But she added that BHDDH already has 45 commitments from group home residents who have agreed to go into shared living.  

A year ago, the Division of Developmental Disabilities had not yet done a “deep dive” into the shared living program to understand what needed to be done to make it more attractive to consumers, Boss said.  She suggested that since then, officials have identified some issues that have prevented more rapid expansion of the program, but Boss was not specific.

Pressed for more details, she said they would be forthcoming in a month – May 5.  At last count in December, there were 333 residents in shared living arrangements and 1,283 in state or privately-run group homes, according to a Senate fiscal analysis. 

In the next budget, beginning July 1, BHDDH has proposed saving $3.9 million in state revenue related to movement out of group homes, but Boss said she could not guarantee that the department would meet its future budget targets. 

DiPalma also warned Boss that a similar transition away from group home care for children in state custody has shown that, for a time, residential costs actually increase because the state must maintain group housing while it builds its community-based network of home care.

A big part of the savings plan in the next fiscal year is to close a total of five group homes run directly by the state through Rhode Island Community Living and Supports (RICLAS), a division of BHDDH, including two in July, one in October, and two in January, 2018. 

Jim Cenerini, legislative affairs and political action coordinator for the American Federation of State, County and Municipal Employees, Council 94, (AFSCME) expressed concern about the closures, which would move 30 residents, or 20 percent of the 150 people in the state-run system, into private care.

He said BHDDH officials have not talked about the closings with the union, which represents several hundred workers staffing the homes. 

Boss said BHDDH officials would be “more than happy” to sit down with the union.

Cenerini said, “We believe RICLAS provides a very vital service as a provider of last resort.”  He maintained that RICLAS residents are not ready to go to shared living arrangements. 

Two years ago, the union negotiated many cost-saving concessions with BHDDH that gave the department much more flexibility in staffing, but BHDDH hasn’t implemented any of the reforms except to hire seasonal workers who are ineligible for benefits, Cenerini said.

RICLAS workers are state employees, many of whom make at least double the poverty-level wages of workers in a parallel system of private agencies under contract with the state to provide most of the developmental disability services.

DiPalma told Cenerini that the “train has left the station” on the shift from congregate care to settings that are more like home. 

The change in Medicaid rules have been influenced by the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that the Americans With Disabilities Act requires services for all people with disabilities to be available in the least restrictive environment that is therapeutically appropriate. That environment is presumed to be the community for both daytime and residential services.

“It’s up to us to figure out how to move those people into the community,” DiPalma said, and “how to facilitate the  workers at RICLAS to do other things.”  The conversation should not be about residents remaining in RICLAS homes “because this is what we have,” DiPalma said.

Cenerini emphasized that RICLAS offers continuity of care, something the private system lacks because of low wages and high turnover. “I don’t want to see the destruction of my union,” he said.

About 20 RICLAS workers also host adults with developmental disabilities in their homes as shared living providers, Cenerini said.

One reason BHDDH has a hard time meeting budget targets, Cenerini said, is that “they are asked to do so much with so little.”

Testimony at the hearing reiterated support for a $6 million wage increase in the fiscal year beginning July 1 for private-sector direct care workers, who now earn an average of about $11.14 an hour, according to the latest figures provided by Donna Martin, executive director of the Community Provider Network of Rhode Island. 

The current hourly average of $11.14 is only slightly higher than the federal poverty level of $9.82 an hour for a single parent household with two children, a profile that represents the typical direct care worker in developmental disability services, she said.

About one in three workers a year leave private agencies, many of them for slightly higher pay in a local market or to work at RICLAS, where they are paid an additional $5 an hour to do the same work, Martin said in written testimony she submitted to the committee.

The budget now in effect gave private-sector workers their first increase in a decade, putting an additional 36 cents an hour in their pockets, before taxes.  

DiPalma has sponsored a resolution that would increase the pay of these workers to $15 an hour in five years – the fiscal year beginning July 1, 2021. (In the House, State Rep. Teresa A. Tanzi has sponsored a similar resolution, which would achieve a $15 hourly rate in three years – by July 1, 2019.)

DiPalma’s and Tanzi’s resolutions also urge the legislature to link future annual raises to the consumer price index so that pay stays ahead of the minimum wage, currently $9.60 an hour. Governor Raimondo has proposed increasing the minimum wage to $10.50 on July 1.   The Senate Finance Committee held a separate hearing on wage increases May 21. (Click here to read related article.)

DiPalma highlighted another feature of the budget that seeks to add a total of $500,000, or $250,000 in state funds, to a supplemental allocation for developmental disability services that he said runs about $20 million to $22 million annually.

These supplemental funds are used when those receiving developmental disability services believe their individual budgets are inadequate and make a successful argument for more money, or when they need a short term boost in care triggered by events like a discharge from a hospital, according to Kerri Zanchi, Director of the Division of Developmental Disabilities.

DiPalma said he concurred with the use of funds to cover short-term extra needs, but he believed $22 million a year, or 10 percent of all service appropriations -  was too high for supplemental appropriations. 

 He called on BHDDH to change the equation that assigns individual funding.

Zanchi said the individual budgets are assigned on the basis of a standardized assessment of an individual’s need called the Supports Intensity Scale. In November, Rhode Island moved to an updated version of the assessment believed to be more accurate and began tracking the results to see if the number of appeals decline in the long run.

DiPalma noted that the current arrangement favors those who have the strongest advocates on their behalf.

Another hearing on budget is scheduled before a subcommittee of the House Finance Committee on Tuesday, April 11, in Room 35 of the State House at the conclusion of that day’s full House session. 

 

 

Madden to Leave RI Consent Decree Post; Lawyer Dianne Curran Named New Coordinator

By Gina Macris

Mary Madden, the coordinator of Rhode Island’s efforts to comply with a federal consent decree mandating a transformation of developmental disability services, will step down from that post at the end of March.

Mary Madden                          File Photo

Mary Madden                          File Photo

In her place will be Dianne Curran, a longtime disability rights lawyer who has worked both in Rhode Island and Massachusetts, most recently as a consultant to the Massachusetts Department of Elementary and Secondary Education.

The announcement was part of a public community forum at the North Providence Senior Center Feb. 23 that also catalogued a series of system-wide changes undertaken in recent months, even though developmental disability services still fall short of the funding parents said is necessary to individualize supports for their sons and daughters.

And the audience was reminded that family stories are the ones that make the biggest impact with members of the General Assembly, who in the next several months will consider increases in the current budget and one for the fiscal year which begins July 1.

Curran, al awyer for both Rhode Island Legal Services and the RI Protection and Advocacy System (now the Disability Law Center) during the 1980s, also has served Massachusetts state government in various legal positions in education, human services and developmental disabilities departments. Her lengthy experience in that state includes a brief stint coordinating activities in response to consent decrees affecting adults with developmental disabilities and mental illness.

Madden, a veteran developmental disabilities professional in the private sector, became consent decree coordinator for Rhode Island in January, 2016, at a time when the state was just beginning to craft a response to the 2014 federal consent decree.

 On Thursday, Madden said that continuing as consent decree coordinator “was not in the long-term plan.”  Madden said she would not have returned to graduate studies in disabilitiesand public policy at Rhode Island College if she were not satisfied that that the state had gained momentum in responding to the consent decree. 

Most recently, Rhode Island recruited Kerri Zanchi as director of developmental disabilities after a six-month vacancy in that post.

Zanchi is a career administrator in developmental disability services, who, like Curran, has extensive experience in Massachusetts. She told the audience at Thursday’s forum that she was drawn to the Rhode Island job because of the state’s commitment to community-based services and the opportunity to make lasting change as the state shifts away from isolated day programs and sheltered workshops to comply with the consent decree. The decree requires the state to comply with the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that services for all persons with disabilities must be desegregated in accordance with the Americans With Disabilities Act.

Thursday’s session, attended by about 30 people, was notable for its low-key, conversational tone, a sharp departure from the angry complaints that dominated such meetings during 2016.

In the last six months, developmental disability officials reported, they have made several improvements, including the following:

  • speeded up the application process for adult services for individuals with developmental disabilities and adopted a policy to determine eligibility for adult services by the time special education students turn 17

• named a full time transition coordinator,  Carolee Leach, to work with high schools and the families of their special education students in preparing for adult life

• implemented a modest raise of about 36 cents an hour for direct care workers, as directed by the General Assembly

• introduced revisions to an assessment process used in determining individual funding allocations

• rolled out a supported employment incentive program for private service providers whohave placed 20 adults with developmental disabilities in jobs in the community since January

An independent court monitor in the consent decree case, however, has said in a recent report that the state must do much more to comply with the consent decree. (Click here for article on monitor’s latest report.)

At the meeting,  Zanchi, Madden and several other officials, including Jennifer Wood, General Counsel to the Office of Health and Human Services, heard from parents who said their adult children are lacking individualized community-based services.

Pat Abbate

Pat Abbate

Pat Abbate, who has a 46 year-old son with significant challenges, said the agency which serves him has good intentions but does not have enough financial resources to individualize services in the community

Tammy Russo, who has a 21 year-old son with disabilities, said he gets “no community services except for me.”

Greg Mroczek said 70 percent of his daughter’s program is in a day center isolated from the community.

Earlier in February, the same developmental disability officials heard a similar theme – a lack of adequate funding - from a mother who said she was forced into managing her daughter’s services because no agency would take her. Mary Genco said she asked 19 agencies, and each one said it had no nurse who wanted to deal with her daughter’s medical needs.

Genco, who is home with her daughter nearly all the time, said she represents growing minority of aging parents who are being “worn out” by adult children with extensive medical or behavioral support needs.

On Thursday, Pat Abbate put numbers on the funding gap. She said – and a check of the state’s Office of Management and Budget (OMB) website confirms – that funding for developmental disabilities lags behind the high of $260 million enacted by the General Assembly for the fiscal year between July 1, 2007 and June 30, 2008. At this time last year, the enacted budget was just shy of $231 million, according to OMB documents.

In response to a federal court order which said the state did not allocate enough money to implement the consent decree, Governor Gina Raimondo later pushed for increases, approved by the General Assembly, which boosted the bottom line to $246.2 million in the current fiscal year.

In her most recent budget proposal in January, Raimondo seeks an additional $4.4 million to finish the current fiscal year, for a total of $250.6 million. For the next fiscal year, beginning July 1, Raimondo has asked the General Assembly for $256.7 million.

Heather Mincey, a developmental disabilities administrator, said, “With our budget we try to advocate for as much money as we can.”

Brian Gosselin, chief strategic officer at OHHS, explained that the various departments of state government are active in their own advocacy, working with OMB and the Governor’s office, from July through December. But the state agencies don’t control the allocations, he said.

With the governor’s budget proposal now in the hands of the General Assembly, Gosselin and Mincey agreed, it’s vital that the community speak up.

“It’s important for families and advocates to be out there to speak to their representatives and let them know what your needs are,” Mincey said. 

A member of the audience, who said he works for a developmental disability service agency in Massachusetts, drove home Mincey's and Gosselin’s message.

The voice of families and advocates for developmental disability services is much stronger in Massachusetts than it is in Rhode Island, he said.

“When a family member calls up and gives them (legislators) a story, it makes such an impact,” he said. “I don’t think enough people get that point” in Rhode Island.

 

 

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Click here to read the monitor's report. 

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

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.

 

 

 

 

RI Governor Raimondo Asks for Wage Hikes for Direct Care Workers in FY 2018 Budget

By Gina Macris

Governor Gina Raimondo is asking the General Assembly to approve a total of $11 million for raises for front-line human services workers who provide homecare or who work directly with adults with developmental disabilities.

The proposal was one of the highlights of a budget plan that includes nearly $1.4 billion in human services funding in an overall fiscal package totaling about $9.3 billion for the2018 fiscal year, which begins July 1. The budget was delivered to the General Assembly Thursday, Jan. 19.

“For home and community-based placements to be successful, the state must have a robust provider network and support system, “ Raimondo said in a statement. ” To build this capacity, workers with the right skills must be paid enough to fill those jobs,” she said.

Jonathan Womer, director of the Office of Management and Budget, told reporters at a budget briefing that keeping direct care workers on the job has been “really difficult.”  Workers in equivalent jobs in Massachusetts make about $13.00 an hour.

The added money for wages includes a 5 percent hike for workers who provide direct services to adults with developmental disabilities, or 56 cents an hour, bringing their average hourly pay to $11.74. Homecare workers would see a 7 percent, or 78-cents-an-hour increase, for a new average hourly rate of $11.96

Raimondo also has proposed raising the minimum wage from $9.60 to $10.50 an hour, an increase of 90 cents.

Since July 1, developmental disability and home care workers have been paid an average of $11.18 an hour, according to figures released by State Sen. Louis DiPalma, D-Middletown. In October, DiPalma asked the Governor to include additional raises in her next budget as part of a five-year plan to raise the pay of front-line workers to $15.

Last May, Raimondo proposed pay hikes in apparent response to pressure from the U.S. District Court, which is monitoring implementation of a 2014 consent decree designed to desegregate day services for adults with developmental disabilities.

Judge John J. McConnell, Jr. earlier had ruled that the state did not spend enough money to provide the community-based services required by the consent decree and risked being held in contempt of court if it did not sufficiently fund supported employment programs.

The consent decree runs out in 2024, and McConnell is still holding periodic reviews of the case. The next hearing is Friday, Jan. 27.

To encourage supported employment, the General Assembly added $6.8 million in the current budget for job coaching and related activities, but that performance-based incentive program is just getting off the ground, five months after a court-ordered deadline.

Budget briefing materials released Thursday were silent on whether the program will continue, and state officials were not immediately able to respond to detailed questions.

Service providers have said the incentive program, set up to provide one-time bonuses for staff training, new job placements, and job retention, is a distraction from the fundamental problem that agencies continue to be chronically underfunded.

Raimondo asked the General Assembly for an additional $4.9 million for caseload growth in fiscal 2018. The General Assembly spurned a similar request last year, with the House leadership saying the numbers showed a stable caseload, at about  4,000 clients. 

House Speaker Nicholas Mattiello has said that if and when the caseload increases, the General Assembly will listen.

In the last few months, the independent court monitor in the consent decree case has required the state to identify all young people over the age of 14 who likely will be eligible for adult developmental disability services in the next seven years, but the state has not yet released firm numbers.

In all, Raimondo would add nearly $4.4 million to the bottom line to cover developmental disability spending for the remainder of the current fiscal year and $6 million more in the next budget.

Those increases in developmental disabilities apparently would by offset by cost-shifting to The Department of Human Services, as well as cuts in funding authorizations to individuals who receive developmental disability services.

Raimondo’s budget message suggested that developmental disability officials plan to save about $850,000 in state revenue during the remainder of the current fiscal year and an equal amount in the next one by cutting individual funding authorizations to adults with developmental disabilities to “appropriate resource allocation tiers.”  

In the past few years, such attempted cuts have been routinely contested  -- often successfully -- by service providers and families in time-consuming appeals involving a controversial individual assessment called the Supports Intensity Scale.

All developmental disability services are funded by a combination of federal Medicaid and state revenue at a rate of roughly 1 to 1, and the governor’s request for increases come in spite of increased pressure on overall Medicaid costs.

The current authorized spending level for all developmental disability services is $246,242,419. Raimondo’s supplemental budget would raise that total to $250,626,970 by June 30. The spending limit for Fiscal 2018 would increase yet again to $256,707,760, according to her plan.

Developmental disability services make up more than 60 percent of the total BHDDH budget, which is currently $385,632,555. Raimondo would like an additional $15,457,021 for a total of $401,089,575 to close out the current fiscal year. The bottom line for the next fiscal year would be $394,366,931.

 

RI Tries To Improve Assessment Used For DD Funding; Families Not Feeling It Yet

Christine Vriend, Senior Trainer for AAIDD

Christine Vriend, Senior Trainer for AAIDD

By Gina Macris 

A two-hour discussion about the Supports Intensity Scale, used by Rhode Island to assign funding to adults with developmental disabilities, exposed a big gap between the vision of the professionals who created the assessment and the practical experience of families and service providers who must respond to the extensive questionnaire.  

At the Arnold Conference Center in Cranston Nov. 17, Christine Vriend, senior trainer for the American Association on Intellectual and Developmental Disabilities (AAIDD), explained the newest version of the assessment as a guide for developing better individualized plans of support.

But many family members and service providers described the SIS as a tool for cutting funding. They said interviewers administering the questionnaire have been argumentative and combative, showing little respect for them, while seeming determined to lower assessment scores.

Heather Mincey, administrator of the Division of Developmental Disabilities, said she and other officials are working as hard as they can to make changes.

Mincey

Mincey

Vriend, said new features of the Supports Intensity Scale are designed to better capture the need for support for exceptionalmedical needs or behavioral issues. 

AAIDD did not design the SIS as a funding tool, but many states use it that way, Rhode Island included. 

In July, in response to a federal consent decree and U.S. District Court order, the state changed its assessment policy in an attempt to separate a determination of what kind of support someone needs from the allocation of money to pay for it. The U.S. Department of Justice and the independent court monitor in the consent decree both have said there was a conflict of interest in having the same agency of state government conduct the assessments and determine the funding.

Most provisions of the consent decree address a shift away from sheltered workshops and isolated day programs to a network of community-based job and leisure activities, in keeping with the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that a reliance on segregated services violates the Americans With Disabilities Act.

Since July, state developmental disabilities officials, under the direction of the Executive Office of Health and Human Services (EOHHS), have begun to re-train their assessors to use the relatively new SIS-A, released by AAIDD in 2015.

One mother, Tammy Russo, had an interview with a newly re-trained assessor last week. She said the assessor collapsed eight questions into one, stringing together references to several types of medical care into a single sentence, making the information sound so complex that she couldn’t follow what was being said.

Russo, however, said the interviewer ultimately gave her a copy of the questionnaire so she could read along as the questions were being asked.

Russo was asked by officials at the forum to follow up on her experience by calling the supervisor of the SIS interviewers.

Ed McLoughlin, another parent, said that in the SIS interview he attended, “the woman clearly was working to get a lower rating.”

Mincey said that kind of feedback has been discussed a great deal: “If you’re not describing exactly what you need and we’re not getting what you need, that information is not part of the SIS.”

The key to answering the questions, Vriend explained, is not to explain what a person can or cannot do but to think about what supports are needed for someone to be successful at a particular activity – even a hypothetical one. Interviewers are instructed to ask all the questions on the form, whether the topics fit an individuals’ current activities or not.

She declined to answer funding-related questions, emphasizing that she works for AAIDD, not the state.

One woman, who declined to give her name, said a mother who knows exactly how to answer questionsin a SIS interview had a “really horrific” experience when her daughter’s funding was reduced from the highest levelto an average level, even though there had been no change in her condition.

“What the mother and the agency had to go through (on appeal) was heartbreaking,” the woman said.

Megan DiPrete, a family member of an adult with developmental disabilities, said it’s her experience that SIS interviews are conducted in a “combative environment.”

“It’s clearly an issue that needs to be addressed, she said.

DiPrete

DiPrete

Another woman spelled out the disrespect she said she witnessed, although she declined to give her name because she works for a direct service provider and is not authorized to speak on the agency’s behalf.

The woman said she asked the interviewer not to speak so fast so that the person under assessment could better follow the conversation. The interviewer refused, saying that if she did so, she would stutter.

Then three people told the interviewer that the person under assessment could not advocate for himself, and the interviewer responded, “Well, he can talk can’t he?”

Vriend likened the discussion that is supposed to occur at SIS interviews as a “table of supports.” The various participants are not supposed to be “butting heads,” she said.

Interviewers have a responsibility to describe the question using consistent language and to help respondents understand the intent of the item, she said. It is important for respondents to be “fully engaged in that process” and provide “perspective and justification for a score.”

All sides should be in agreement with the scores, but if “if you disagree, you should have an avenue to take this further,” Vriend said.

Vriend said AAIDD verification procedures generally confirm the accuracy of the SIS as it is administered in the field. The SIS is used in about half the United States and abroad.

But recurring complaints about the SIS in Rhode Island that have surfaced at public sessions throughout the year indicate there a lack of public confidence in the SIS. AAIDD says public confidence is important in the successful implementation of the assessment program.

In her role as a trainer, Vriend addressed one of the most controversial parts of the assessment in Rhode Island; the need for exceptional supports for individuals for behavioral issues. Those supports can be labor-intensive, and therefore costly. 

She said,  ”We’re not rating the severity of the behavior or how often it occurs. What we’re rating is the support needed to address that behavior or prevent it. If you haven’t had an assault in three years, but one of the reasons is solid support, then we’ve got to recognize that.”

In other public sessions, parents and providers have expressed the view that in some cases, once such exceptional supports are in place and have been given time to stabilize a client, the assessor looks only at the improved behavior. In those cases, all the effort put into realizing those improvements are discounted in the ratings, which lead to lower scores and less funding, they say.

Several suggestions emerged from the audience to help family members and providers feel more confident in the SIS process. They urged the state to put into place several safeguards. Among them:

·         Families and providers should be given copies of the questionnaire so they can read the questions as they are being asked. (On Nov. 18, Mincey issued a statement saying this change will be implemented immediately.)  

·         Families and providers should be informed at the interview that they have a right to appeal and should be given contact information for lodging complaints. They should be asked to fill out evaluation forms on the interviewers

·         Families and providers should be given copies of the completed questionnaires to better understand the scores.

Individuals with developmental disabilities and their guardians have a legal right to their own health care records, including assessments like the SIS, according to the U.S. Department of Health and Human Services.

At the meeting, Mincey acknowledged that families have had difficulty in the past obtaining copies of their loved ones’ SIS results, but she said the Division of Disabilities is now granting those requests.

Mincey referred questions about the SIS to Donna Standish, the SIS supervisor. Standish can be reached at 401-462-2628 or Donna.Standish@bhddh.ri.gov

Public Information Session Nov. 17 on New Individual Assessment of DD Support Needs

By Gina Macris

This article has been updated

A representative of the national organization which created the Supports Intensity Scale (SIS), the individual assessment used to assign Medicaid funding to adults with developmental disabilities in Rhode Island, will help explain a new version of the questionnaire at a public information and training session Thursday, Nov. 17.

The American Association on Intellectual and Developmental Disabilities (AAIDD), which created the SIS used in Rhode Island since 2011, released a new version in 2015 that the organization says is better designed to capture the needs of adults with developmental disabilities.

A spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said that the new version, called the SIS-A, is being put into use this month in individual reassessments.  

The SIS, rather than focusing on an individual’s handicaps, was designed to determine how much support a person needs to function successfully in the various activities of daily living. It was not designed as a funding tool, but many states, including Rhode Island, use the SIS to determine individual budgets for support services.

The administration of the SIS in Rhode Island ranks high on the list of parental complaints, judging from comments made at public forums earlier this year.

The Nov. 17 forum will be from 4:30 to 6:30 p.m.  in the Arnold Conference Center of the Regan Building at Eleanor Slater Hospital, 111 Howard Ave., Cranston.

BHDDH officials ask that participants RSVP by emailing BHDDH.AskDD@bhddh.ri.gov

More information about the SIS-A is available on the AAIDD website. For additional questions, email BHDDH.AskDD@bhddh.ri.gov

The SIS also will be on the agenda of a general public forum on adult developmental disability services, tomorrow, Wednesday, Nov. 9, from 4 to 6 p.m. at the Cherry Hill Manor Nursing and Rehab Center, 2 Cherry Hill Rd., Johnston.

Jane Gallivan, a consultant to the Executive Office of Human Services, explained in some detail the rationale for moving to the SIS-A during an interview in late September. To read that entire article, click here.

 

Gallivan's Short Stint in RI Brings Plenty of Change, Starting with Plans for Better DD Assessment

Jane Gallivan   Photo by Anne Peters

Jane Gallivan   Photo by Anne Peters

By Gina Macris

In just the few months she has served as interim director of Rhode Island’s Division of Developmental Disabilities, Jane Gallivan has been instrumental in changing the state’s approach to providing services for individuals with intellectual challenges.

On the most concrete level, she has set plans in motion to adopt an improved version of a controversial assessment – the Supports Intensity Scale (SIS) – to more accurately determine the needs of clients.

With help from the Executive Office of Health and Human Services, Gallivan also has shifted strategies for presenting the division’s budget so that the state Budget Office and the General Assembly better understand what it means to support individuals with developmental disabilities.

The initiatives Gallivan has begun, and the tone she has set, are expected to continue after her role changes Friday, Sept. 30, to that of long-distance consultant.

Gallivan, 68, is taking her 101 year-old mother to Florida for the winter, a commitment she made before Rhode Island officials approached her for short-term help in leading the developmental disabilities division.

She will continue to monitor and guide reforms and will serve on the committee that will screen applicants for the division’s permanent chief.

A former state-level director in Maine and Delaware, Gallivan already has been spreading the word about the director’s job through her nationwide contacts in the field of developmental disabilities.

As she prepared to end her full-time role in Rhode Island, Gallivan shared her perspective on the future of developmental disability services in Rhode Island.

Major Changes Coming to Every State

Gallivan says all state developmental disability service systems are in the midst of a sea change because of sweeping new Medicaid regulations.

The rules say that all services for the elderly and individuals with all types of disabilities must be provided in the least restrictive setting that is therapeutically appropriate, which is presumed to be the community.

After March, 2019, Gallivan said, Medicaid will no longer pay for sheltered workshops or segregated day programs after March, 2019.  Sheltered workshops don’t fit the Medicaid’s definition of “community,” she said.

Federal Medicaid dollars pay for half the cost Rhode Island’s developmental disability services.

The federal consent decree requiring Rhode Island to shift to community-based jobs and activities may put the state ahead of the curve, she said.

Both the consent decree in Rhode Island and the changed Medicaid regulations nationwide get their authority from the 1999 Olmstead decision of the U.S. Supreme Court, which is in effect a desegregation order for individuals protected by the Americans with Disabilities Act. 

Individuals and families who struggle to find appropriate services may not yet see any change in their lives.

Gallivan says she worries about a caseload ratio that is “way too high” - one social worker to every 205 clients.

Social workers are “really concerned about helping people out,” she said, “but like any other service system, they are often, because of the ratios, dealing more with people in crisis”  or those just entering the system, rather than “supporting the people who are not the squeaky wheel.”

“No one wants to expand state government,” but state government must still “figure out how we’re going to put more resources into case management,” Gallivan said.

A New Way to Assess Service Needs

Since taking the interim director’s job in July, Gallivan has been “looking under the hood,” as she put it, to understand the barriers that need to be removed to allow “people to really get out and enjoy activities in the community, to get better connected, to explore new job options and so forth.”

She’s been searching for hindrances in state regulations, the way programs are funded, and the way clients have been assigned individual funding based on “tiers,” or levels of need.

The Supports Intensity Scale, (SIS) is a lengthy questionnaire used since 2011 to determine the individual level of funding according to “tiers” labeled A through E, with E being the costliest.

In the last few years, the SIS been the single most emotional flashpoint for families, many of whom have complained bitterly not only about results that yield insufficient funding, but that interviewers argued with them or recorded answers different than the ones they gave.

In the next several months, Gallivan said, the state will move to what she hopes will be a more accurate version of the assessment, with additional questions focusing on medical and behavioral needs.

SIS Interviewers will be retrained in the new version by representatives of the organization which developed the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD).

Gallivan said training also will be offered to family members and representatives of service provider agencies, who attend the interviews and help answer questions.

The state will monitor the new approach to determine whether it leads to a reduction of a high number of exceptions now granted to the assessment results. 

The exceptions, in which a client may have more funding than warranted by the official level of support, have raised numerous questions in the General Assembly about how the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) manages its budget. 

Gallivan offered some background on the SIS, which is used in Rhode Island as a basic building block of the developmental disability budget.

On its face, the SIS is a better assessment than some others in use across the country because it frames questions in terms of an individual’s strengths and the supports he or she may need to achieve a particular goal, rather than focusing on deficits, Gallivan said.

But it has its limitations, she readily acknowledged. It is recognized nationwide that the SIS does not address extensive medical needs or behavioral issues, Gallivan said.

“You also have to be sensitive to people who are very independent, but they may get themselves into trouble with the law,” or in some other way, because of their disabilities, she said.  For example, some individuals may appear independent, but if they don’t have the proper support and guidance, they may end up at a homeless shelter, or picked up by police for shoplifting.

The SIS was developed as a tool for planning individualized programs of support, not as a funding mechanism, although many states use it for budgeting, Gallivan said..

As a result of the gaps inherent in the original assessment, the state of Oregon developed a number of questions on behavioral and medical support needs that were tried out by other states and ultimately incorporated into a new version of the questionnaire called the SIS-A, Gallivan said.

“Everyone came to the conclusion that these supplemental questions really did add a more robust, accurate assessment,” she said.

AAIDD released the SIS-A in 2015, according to the organization’s website.

Gallivan said arrangements are being made for AAIDD representatives to come to Rhode Island for training in the SIS-A. At the same time, the consultants who developed the formula for turning SIS scores into individual funding levels have been asked to revise that algorithm to correspond to the SIS-A, she said.

Disability Services: a Lifetime Commitment

Meanwhile, Gallivan has tried to set a different tone for presenting the needs of individuals with developmental disabilities to the state Budget Office. 

“I’m not saying that people don’t know” what the Division of Developmental Disabilities does, “but a lot of people really don’t know,” she said with a chuckle.

“So I think it’s really important to paint a picture” of the service system and the people in the middle of it, Gallivan said.

Budget officials should know who the division serves, whether they live with their families or elsewhere, the kinds of services they receive, why the services are important to them and their families, the actual costs of providing those services, and the expected outcomes, Gallivan said.

That’s a different approach than seeing the system as a list of line items, she said.

It’s important for the fiscal arm of state government to understand that “we are the long-term care system,” Gallivan said.

“People think of the elderly as being the long-term care system, but they’re only in there for a few years,” she said.

“We’re talking birth to 100” in developmental disabilities, she said.

Legislators must understand that they can’t take money from individuals with developmental disabilities and give it to someone else, Gallivan said.

“In this system, everyone who comes through the door will have a life-long need for some kind of support because of the nature of their disability,” she said.

It’s not analogous to the mental health system, where funds may be shifted because one person is in recovery and another is not, Gallivan said.

A Focus on Families

In any presentation she makes, Gallivan said, she tries to emphasize the need to support families who have a member with developmental disabilities living at home with them.

Many families want their loved one at home, she said. "Ffrom a bureaucratic perspective, it’s (generally) the safest place they’ll be,” she said, “and the cost of services in the family home will be less than they will be anywhere else.”

“So how can we invest in families and recognize them as caregivers? We talk about people as caregivers of those with Alzheimer's, but we have people who are caregivers of people with developmental disabilities who face a lot of challenges” and have their own need for support, Gallivan said.

She suggested families should have access to more respite care and should be able to get financial support for modifications like wheelchair ramps.

Gallivan also indicated technology might help families keep tabs on their loved ones, although options like bedroom cameras might not be universally welcome in some homes.

The full range of supports for families “need to become a very strong focus,” Gallivan said, “and the type of planning we need to do with families is very different.”

“You need to talk about the whole family and what the family needs are,” she said.  

Families and individuals who advocate for themselves must be part of the conversation, Gallivan said.