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

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.

Parental Concerns Over RI Consent Decree Persist; State Says No One With DD Will be Forced Into Job

 All Photos by Anne Peters

Jeanne Connery, mother of a young adult on autism spectrum, talks about a job trial that did not go well for her daughter during Wednesday's public forum at the Buttonwoods Community Center in Warwick.

By Gina Macris

“You threw the baby out with the bathwater when you eliminated sheltered workshops,” Brian Newton, the father of a woman with developmental disabilities, told Rhode Island officials at a public forum in Warwick Aug. 17.

In reality, most, but not all, sheltered workshops in Rhode Island closed abruptly in the wake of U.S. Department of Justice findings in 2014 that segregated employment – at sub-minimum wage – violated the Americans With Disabilities Act (ADA).

“What happened to my daughter’s right to work in a sheltered workshop?” he asked. She and her friends “were happy making 5, 7, 12 dollars a week,” Newton said.

“You have to admit there’s a certain population that will never work” at a regular job, he said.

Newton looked straight at Jane Gallivan, Rhode Island’s interim Director of Developmental Disabilities, who happens to have three decades’ professional experience in Maine and Delaware and a national reputation among her peers as an innovator.

Gallivan smiled as she looked back at Newton and slowly shook her head from side to side, kindly but firmly.

“Not to go there,” said Gallivan, who has extensive experience promoting job opportunities for individuals facing intellectual challenges.

Newton persisted, saying there’s a “certain percentage” that won’t be  “bagging groceries or doing piece work.” 

“I hope not,” Gallivan replied. “I hope it’s customized to what they can do.”

Newton:  “They have to have somebody with them.”

Gallivan

Gallivan: “People have job coaches now. You can have a job coach for a very long time.”

 Jeanne Connery, the mother of a 20-year-old woman on the autism spectrum, said her daughter has a high aptitude for math and science but does not connect with people.

She was placed in a job trial in a retail store, where she tagged and stocked shoes and boots, an experience which was not a good match for her, Connery said.

What her daughter needed was the Job Club at the Groden Center, a group that talked about the social and behavioral pointers that do not come intuitively to people on the autism spectrum, Connery said.

That job club did not have the capacity to take on another group member, according to Joseph F. Murphy, administrator in the state Office of Rehabilitation Services.

Mary Madden, Rhode Island’s Consent Decree Coordinator, said, “The bottom line is that this is a free country. Nobody is going to make your son or daughter go to work at a job that isn’t appropriate to them. I just want to say that there are a lot of misconceptions out there.”

There are now “400 people working in the community,” Madden said.

Most of them “are not bagging groceries or working at Home Depot,” Madden said. “We haven’t done a good job getting stories out” about individuals with unique skills matched to the needs of a company.

In fact, one person with a unique job was in the audience. Mark Susa of Warwick, with the help of his father, John Susa, and paid support staff, trains peers with disabilities – readers and non-readers alike -  to use public transportation independently.

Mark Susa also serves on the Board of Directors of the Rhode Island Public Transit Authority. 

Madden, meanwhile, said that regardless of the 2014 consent decree which mandated integration of individuals with intellectual and developmental disabilities,“people should be doing meaningful things every day.

Jennifer wood

“Not everyone is in the community all of the time. People only tend to work 10, 15, or 20 hours a week. They should be able the rest of the time to do something meaningful,” she said.

Gallivan, Madden and others, including Jennifer Wood, Deputy Secretary of Health and Human Services, gave an audience of about 75 people progress reports on budgetary and programmatic fronts since the last community forum in late April.

Among other things, front line support staff will see wage increases in their paychecks by October 1, along with a lump sum retroactive to July 1.

The General Assembly earmarked $5 million for wage increases to some 4,000 direct support staff in the current budget. The increase will average about 30 cents an hour, or about $600 a year, before taxes, based on a 40-hour work week.  

Another $6.8 million in the budget will be set aside for performance bonuses as private service providers meet certain benchmarks in moving clients into jobs in the community and helping keep those jobs.

During the last two months, there has been nearly a complete turnover in the leadership of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, with two key positions yet to be filled.

The state is looking for a new departmental director to succeed Maria Montanaro, who left at the end of June, as well as a permanent Director of Developmental Disabilities to replace Charles Williams, who retired at the end of July.

In the meantime, the deputy BHDDH director, Rebecca Boss, serves as acting director. She attended the community forum.

Gallivan said she can remain as Interim Director of Developmental Disabilities only until the end of September.

Recently retired from the top developmental disabilities post in Delaware, Gallivan had promised her mother, now 101 years old, that she could spend winters with her in her home in Florida. That was before Rhode Island came calling. Gallivan's mother is spending the summer on Cape Cod. 
“How many more winters are we going to have together?” Gallivan said. “That’s why I’m not going to continue much longer” than September, she said.

Wood, the Deputy Secretary of Health and Human Services, quipped that Gallivan’s mother has, in effect, set the timeline for filling the developmental disabilities director’s job.

Gallivan said the challenges Rhode Island faces are “not very different than in many of the other states.”

“We need to have a strong vision of what it is we want to have in Rhode Island,” Gallivan said. “That’s my task when I’m here.”

She indicated there are conflicting internal and external pressures on state government with regard to developmental disabilites.

“Internally, there’s a lot of pressure to deal with rising costs. Externally, the federal Centers for Medicaid and Medicare Services,  “who give us 50 percent of the money, wants us to look at services differently.”

By 2019, all states must provide Medicaid and Medicare services in all categories in the least restrictive setting that is appropriate, according to the latest rules of the CMS. The rule change is in keeping with the Olmstead decision of the U.S. Supreme Court, which clarified a mandate for integrated community-based services in Title II of the Americans With Disabilities Act.

The Olmstead decision also forms the legal basis for the 2014 consent decree in Rhode Island, which affects only daytime supports for individuals with intellectual or developmental disabilities.

Gallivan was asked about the Supports Intensity Scale, (SIS) a controversial needs assessment questionnaire that is used to develop individual funding allocations.

She said the Division of Disabilities “has begun to take a close look” at variability in the scores of the SIS at it has been administered in Rhode Island.

For an individual with developmental disabilities, the results of periodic reassessments are supposed to be relatively stable, because the need for support generally does not change dramatically over a lifetime.

However, analyses of SIS scores performed by a healthcare consulting company under contract to the state show that 46 percent of individuals who were re-assessed showed changed levels of need – and funding.

The review of the use of the SIS is “high on the agenda,” Gallivan said.

Sue Joinson  asked whether there will be an “opening of restrictions on residential placements,” which appear to be available only to families who are in crisis.

“Why is it that I can’t get a concrete plan” for the transition of the younger of her two daughters with developmental disabilities? she asked. She is 60 and her husband is 70, Joinson said.

Gallivan said residential services have been identified “as a need.”

“We need to evaluate all residential options” including shared living, “and move slowly,” she said.

Wood, meanwhile, said that the legal framework of the “least restrictive environment” in the ADA means that state policy does not assume that a group home is the most appropriate residential setting for an individual with developmental disabilities.

The state must offer a “continuum” of options suited to individual needs, she said.

Judge to Consider Remedial Plan

 By Gina Macris

U.S. District Court Judge John J. McConnell, Jr. is poised to consider a remedial action plan to hasten Rhode Island’s compliance with a two- year-old federal consent decree requiring the state to provide community-based daytime services, including employment supports, to people with developmental disabilities.

The U.S. Department of Justice (DOJ) and the state have “jointly determined that, in order to facilitate compliance with the consent decree in this matter, the parties would benefit from a court ordered remedial action plan,” according to a proposed order filed with McConnell in Providence March 1.

 The judge is scheduled to hear the status of the case on Monday, March 14 in Providence, although a spokeswoman for the Court indicated March 8 that the hearing date may be rescheduled. (Update: March 14 at 10 a.m. confirmed as date and time) 

 The proposed Court order, along with a supporting joint motion submitted by the DOJ and the state, spell out a road map for the Court to proceed in considering the facts in the case over the next two months.

In a telephone conference Feb. 24 requested by the state, all sides agreed that three issues stand in the way of full compliance, according to the proposed order. The order and the supporting motion both cite money, the number of integrated, community-based placements, and leadership.

Both sides committed to compliance

"Both Plaintiff and Defendant remain committed to resolving the above listed issues and any other issues identified by the court," according to the joint motion, signed for the DOJ by Vanita Gupta, head of the civil rights division, and for the state by lawyer Marc DeSisto.

DeSisto and lawyers for the DOJ, as well as a Court monitor in the case, have told McConnell that the state budget does not now have enough money allocated to implement the consent decree. The monitor, Charles Moseley, also has said that if the state does not meet certain benchmarks now, it will not be able to comply with the final requirements of the order once the decade of federal oversight concludes in 2024. 

The joint motion and proposed order both call for an evidentiary hearing on April 18 that would require the appearance of the head of the state Office of Management and Budget as well as the directors of three agencies responsible for carrying out the consent decree: the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the Office of Rehabilitation Services (ORS) of the state Department of Human Services and the state Department of Education (RIDE). 

 A week before the hearing, the state would provide the judge with a written report on the status of compliance. During the hearing itself, “Defendant will provide the court with the information necessary to issue an order for remedial action to spur prompt compliance,” according to the proposed court order.

 The parties would reconvene May 2 so that the state can report on “progress relating to funding, placements, and the leadership required for full compliance,” as well as any other court order that may be outstanding at the time.

The monitor has sought the appointment of a secretary-level Consent Decree Coordinator who would have the authority to oversee compliance efforts of the three state agencies involved.   A secretary-level coordinator has been appointed only on an interim basis in recent weeks. 

RIDE is involved because it is responsible for providing transitional services, including school-to-work opportunities, for youth in special education as they approach their 21st birthday. These youth are of particular concern, according to the consent decree, because they are “at risk of entering sheltered workshops and facility-based day programs” when they reach adulthood.” 

Origins of the Consent Decree

The federal case started with a U.S. Department of Labor investigation into sub-minimum wages paid to people in one sheltered workshop. An expanded DOJ inquiry found that (Cut: found) teenagers and adults with developmental disabilities were being segregated from the general population in violation of the Americans with Disabilities Act (ADA).

The U.S. Supreme Court clarified the ADA’s mandate for integration in a landmark 1999 decision that many say struck down segregation for people with disabilities in the same sweeping way that Brown V. Board of Education banned “separate but equal” education for black students.

 The 2014 consent decree in Rhode Island, the first of its kind in the nation, spells out a series of specific deadlines for achieving an increasing number of supported job placements and individualized daytime activity plans over the 10-year period of federal oversight. 

Meanwhile, Governor Gina Raimondo has proposed a net increase of $8 million to the developmental disabilities budget now in place, with the total going from $229.7 million to $237.7 million for the period ending June 30. In the next fiscal year, developmental disabilities would receive a total of $235.2 million. 

Over the next 16 months, the governor’s plan would redirect more than $23 million within the developmental disabilities budget toward private agencies providing integrated daytime services. The state would create this financial boost largely by moving people out of group homes into shared living arrangements with families in communities throughout the state. 

This housing shift would involve 500 of 1300 people now in group homes moving into so-called shared living arrangements voluntarily by June 30, 2017, according to a BHDDH spokesman.  

Donna Martin, who represents an association of private agencies that support families offering shared living in their homes, has called the goal “very ambitious.”

Will the Budget Pass Muster with the Judge in Disabilities Case?

By Gina Macris

When Rhode Island Governor Gina Raimondo proposes a new state budget on Tuesday, Feb.
2, U.S. District Court Judge John J. McConnell, Jr. will be watching to see how the state plans to keep its promise to reform employment opportunities and other daytime services for people with disabilities.

 Rhode Island isn’t spending enough money to meet the deadlines set out in two and three-year-old consent decrees reached in landmark cases involving the Americans with Disabilities Act (ADA).

 And an independent Court monitor overseeing the state’s efforts has said that if Rhode Island doesn’t meet certain benchmarks now, it will be unable to accomplish long-term goals at the end of the decade-long federal supervision spelled out in the consent decree.  

 But at a hearing Jan. 26, a state lawyer told McConnell that Raimondo’s budget would be a “game changer” in advancing Rhode Island’s response to the mandates.

 An internal committee of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) tasked with redesigning services for people with developmental disabilities recommended $36 million in reforms last May,  but in an interview last Friday, a BHDDH spokesman said it is “very unlikely” that sum might appear in the governor’s proposal. 

If the Governor’s proposal falls short of McConnell’s expectations, it could set the scene for some courtroom drama during the upcoming months of budget deliberations at the State House.

The Court has the power to find the state in contempt – if it comes to that – and McConnell made it clear on Jan. 26 that he would not hesitate to use his authority if it is necessary. But said he hoped to avoid it.

 Let’s follow the case and the money at the heart of the issue before the Court.

The case surfaced in 2013 with a consent decree between the U.S. Department of Justice and the City of Providence over Providence teenagers with developmental disabilities, who had been segregated in a program called the Harold A. Birch Vocational School. Birch prepared them for a lifetime of rote assembly-line jobs –at sub-minimum wage – in a sheltered workshop for adults at an agency called Training Through Placement in adjoining North Providence.

 The 2013 settlement – the first of its kind in the nation - asserted the young people’s right to receive services to support them in employment and day activities in more integrated, community-based settings in accordance with the Americans with Disabilities Act.

 "The Supreme Court made clear over a decade ago (in the so-called Olmstead decision of 1999) that unnecessary segregation of people with disabilities is discriminatory. Such segregation is impermissible in any state or local government program, whether it be residential services, employment services or other programs,” a U.S. Justice Department spokeswoman said at the time.

A year later, in June, 2014, the Justice Department’s Civil Rights Division reached a statewide agreement with then-Governor Lincoln Chafee which mirrored the Providence settlement.

Today, 31 percent of Birch graduates are employed in community-based settings – up from 14 percent six months ago – but those numbers fall far short of the mandated goal of 100 percent, according to the independent Court monitor, Charles Moseley, whose oversight continues through 2024. 

 He and a Justice Department lawyer, Victoria Thomas, each laid out a laundry list of other deficiencies in the Jan. 26 hearing before McConnell, who said he wanted to see the parties before him again in three months. 

 Now to the money:

 In the fiscal year that ended June 30, 2005, Rhode Island paid $187.3 million in state and federal dollars to private agencies providing services to Rhode Islanders with intellectual disabilities, according to state figures. Currently, the state allocates $188.4 million to those services.  It’s all Medicaid money, with the state providing 45 cents on the dollar and the federal government paying the rest, according to the BHDDH spokesman.  

In the meantime, the number of people reaching adulthood with developmental disabilities has been increasing. The current annual rate is about 100, and the average yearly cost of supporting one person is $55,000. 

 From 2005 through fiscal 2008, the DD budget rose to $215.3 million. But as the shockwaves of the 2008 economic crash reverberated, the budget shrank, as did DD allocations in other states.

 While some other states started restoring money to DD services, Rhode Island slashed further.

 For the fiscal year ending June 30, 2012, the Rhode Island General Assembly chopped nearly $26.5 million off the allocation, reducing it from $206.5 million to just under $180 million. That’s a cut of 12.8 percent in one year.

And BHDDH put in place a reimbursement system that does not cover all the services that agencies provide during daytime activities – only face-to-face contact with clients. The legwork necessary to set up job interviews or community activities, for example, is excluded. This arrangement “incentivized” the segregation of people with developmental disabilities in sheltered workshops and day facilities, Thomas, the Justice department lawyer, told McConnell on Jan. 26.

 Even though the BHDDH administration changed with the inauguration of Raimondo as Governor in 2015, the reimbursement system remains in place. Moreover, BHDDH allows agencies to collect the money owed for daytime supports only through a burdensome reporting process that requires documenting each worker’s time in 15-minute blocks, for each client. If a client is sick, the agency does not get its client-specific incremental payment for that day.   

Since 2011,  private nonprofit providers have cut workers’ pay to an average of $11 an hour, staff turnover has skyrocketed, and two agencies have closed their doors.

 In an interview on Friday, the BHDDH spokesman, Andrew J. McQuaide, acknowledged that satisfying the mandate for integration “fundamentally costs more than the system we have now.” He agreed that the system is geared toward “congregate centers for day programs and employment.”  Service providers should be held accountable, though, said McQuaide, the department’s new Chief Transformation Officer.

 Last October, Maria Montanaro, the BHDDH director, told a group of parents that the $36 million in redesign recommendations had been tabled because of the cost.

 On Friday, McQuaide said it’s “very unlikely” the $36 million in reforms would re-surface in the Governor’s budget proposal. 

“I’m unaware of anyone who thinks the state can afford to increase the DD funding by $36 million in a single year,” he said. “It would be unprecedented in a single fiscal year.”

“The question becomes how to sequence this,” McQuaide said.

 He said he couldn’t speculate on how the court will react.

 “There’s no way of knowing what would please the court,” he said. But “at the end of the day I am optimistic we will move in the right direction.”