Kerri Zanchi, Former Massachusetts Rehabilitation Official, Named DD Director for Rhode Island

By Gina Macris

Kerri Zanchi, a former high-level developmental disability service official in Massachusetts, has been named Rhode Island’s Director of Developmental Disabilities in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Zanchi, who has past ties to Rhode Island, begins her job here Jan. 23, according to Rebecca Boss, acting director of BHDDH.

 “We are certain that she’ll be a strong leader and we look forward to introducing her to you at our upcoming community forums” in February, Boss said.

“She has focused on quality services that encourage independence as well as community integration.” 

Boss said Zanchi embodies four characteristics at the top of the list of qualities identified in community forums held before the search: 

• ·  hands-on experience with individuals living with developmental disabilities
• ·   experience with government
• ·  a deep understanding of how Medicaid works
• ·  good communication skills

Zanchi, meanwhile, issued a statement saying she accepted the job because of the “tremendous opportunity” and “strong commitment” on the part of state leaders “to transform the development disability system to deliver high quality services that individuals and families deserve.”

She praised the “strong vision and clear goals” guiding the work of the developmental disability leadership team and said she found the community “engaged, with much expertise to offer as this work unfolds.”

“I look forward to partnering with individuals, families, the community and my colleagues in government to build on this momentum and move the service system in a direction that results in better services, better outcomes and more opportunities for all Rhode Islanders living with developmental disabilities,” Zanchi concluded.

Her salary will be $102,860, according to a spokeswoman for the Executive Office of Health and Human Services (EOHHS).

Zanchi, 43, is a native of Massachusetts who grew up in East Lyme, CT. She began her career working directly with adults with developmental disabilities in Rhode Island and received her master’s degree in social work from Rhode Island College in 1999.

After completing her studies, she worked at the administrative level in both the public and private sectors in Massachusetts, rising in 2014 to Assistant Commissioner of the Massachusetts Rehabilitation Commission, one of several agencies falling under the jurisdiction of that state’s Executive Office of Health and Human Services.

The Commission provides an array of services that promote empowerment and independence for individuals with disabilities, according to its mission statement. As Assistant Commissioner, Zanchi provided leadership and advocacy for six departments of state government focused on community living, covering the gamut of concerns from consumer issues to independent living, assistive technology, protection from abuse and specialized services for individuals with brain injuries, according to a resume released by Rhode Island officials.

The resume says she implemented performance management practices and contributed to cross-agency collaboration. These issues are relevant in Rhode Island because of the demands of a 2014 consent decree that requires various state agencies to work together to  desegregate daytime services for adults with developmental disabilities following specific goals set by the U.S. District Court. 

Zanchi left Massachusetts government in the fall of 2015, according to the Massachusetts Rehabilitation Commission’s annual report that year. She became Associate Executive Director of the Center for Living and Working, Inc., based in Worcester, leading the organization through a restructuring that emphasized staff development, quality improvement and performance-based outcomes.

In addition, she served as Coordinator of the Massachusetts Aging and Disabilities Resource Consortium for five partner agencies in central Massachusetts, strengthening community and provider collaborations, according to the resume.

Zanchi will succeed Charles Williams, who retired as Director of the Division of Developmental Disabilities last July 22.

The current budget for the Division of Developmental Disabilities is $246.2 million, providing services for a total of about 4,000 adults with intellectual and developmental disabilities, most of whom receive direct care from 36 private agencies under contract with the state.

The division director oversees a staff of about 350 that determines eligibility, the level of individual need, conducts case management, oversees the state-run group home system, and provides administrative support, according to the EOHHS spokeswoman.

It is expected Zanchi will play a key role in shaping the state’s implementation of the 2014 consent decree, which has come under close scrutiny by District Court Judge John J. McConnell Jr., after the federal Department of Justice challenged the state’s progress.

The EOHHS spokeswoman, Sophie O’Connell, said Zanchi “will work very closely with the leadership teams at BHDDH and EOHHS to move forward the Division’s work to achieve the terms of the consent decree and strengthen services for individuals with developmental disabilities.”

O’Connell noted that both the state’s Consent Decree Coordinator, Mary Madden, and the Deputy Secretary of Health and Human Services, Jennifer Wood, served on the search committee for the new director.

In the last year, since McConnell made it clear he would personally weigh in on the progress of the consent decree, Wood has taken the lead in assembling a team of officials to respond to the court’s requirements. She has a legal background in developmental disability law.

Besides Wood and Madden, the search committee for the developmental disability director included Brian Gosselin, Senior Strategy Officer at EOHHS; Jane Gallivan, former interim director of the Division of Developmental Disabilities and a consultant to the state; and Deanne Gagne, CEO/Founder of Bridge Building Services; Coordinator of Advocates in Action; and Assistant Coordinator of the Cross Disability Coalition.

A total of 74 applications were screened. Nine candidates were interviewed initially and four were called back for second interviews. The names of finalists – O’Connell did not say how many – were forwarded to Boss and to Health and Human Services Secretary Elizabeth Roberts, who made the final decision. 

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

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.

Gallivan Tapping National Network of DD Professionals to Spark Interest in RI Job

By Gina Macris

The search for a new director of developmental disability services in Rhode Island is well underway, even though the position has not yet been advertised. 

Jane Gallivan, the interim director, has been drumming up interest in the job through her national network of contacts in the field of developmental disability services.  In an interview Sept. 13, she said she has spoken to several likely candidates. 

One of the reasons Gallivan was recruited for the post on an interim basis was her ability to tap into the leadership network in developmental disability services across the country, according to Jennifer Wood, Deputy Secretary of Health and Human Services. 

Gallivan, a longtime director of developmental disabilities in Maine and more recently in Delaware, belongs to the National Association of State Directors of Developmental Disabilities Services (NASDDDS). 

Recent directors have not been required to have any particular expertise in serving adults with intellectual challenges. But that will change with revisions to the job description, which Gallivan said she hopes to complete by the end of the week. 

An ad Gallivan sent Thursday to NASDDDS said Rhode Island is looking for an experienced leader in the field who also has a track record in “affecting and driving change.”

The ad described Rhode Island as “undergoing a significant redesign in the delivery of services to individuals with developmental disabilities and their families,” by focusing on putting individual needs first, boosting employment, and supporting families better.

Gallivan said the NASDDDS notice will reach hundreds of professionals in the field.

She also plans to spread the word through the National Leadership Consortium on Developmental Disabilities at the University of Delaware, best known for training up-and-coming leaders in the field and helping build networks among them. 

Next week, the position will be posted on the state’s employment website and then the process of screening applications will begin, Gallivan said.

Gallivan will serve on the screening committee, along with Jennifer Wood, Deputy Secretary of Health and Human Services; Brian Gosselin, Chief Strategy Officer at the Executive Office of Human Services (EOHHS); and Mary Madden. 

Madden, based at EOHHS, coordinates the state’s efforts to comply with a federal consent decree that enforces a 1999 Olmstead decision of the U.S. Supreme Court mandating desegregation of developmental disability services nationwide. 

Madden indicated Tuesday during a meeting of a task force empowered by the 2014 consent decree that there may be at least one “listening forum” at which members of the screening committee would hear comments from the public on the characteristics most desired in a new director. 

The public may also write to the screening committee via the following email address: BHDDH.AskDD@bhddh.ri.gov , according to an EOHHS spokeswoman. 

Neither Madden nor Gallivan could offer an official timeline for the appointment of a new director. 

The screening committee will make recommendations to Elizabeth Roberts, Secretary of Health and Human Services; and Rebecca Boss, Interim Director of the Department of Behavioral Health, Developmental Disabilities and Hospitals, who will jointly make the selection.  

In the short term, Gallivan will remain a consultant but will step down as interim director at the end of September because of family responsibilities. 

While the Division of Developmental Disabilities awaits a new director, there will be a meeting of a team of administrators “every single morning” to go over issues that need follow-up that day, Gallivan said. 

The administrators include Madden, Gosselin, Heather Mincey, administrator of the division; Anne LeClerc, the program improvement chief, and Tracey Cunningham, the chief employment specialist, Gallivan said.

The new director will have the primary responsibility for implementing policy changes driven by the consent decree, which requires that the state move away from sheltered workshops and other segregated programs toward a system of individualized services based in the community. 

The division is part of BHDDH, but in the long run, it’s not clear where the director’s position will fit into the administrative structure. 

EOHHS has taken the lead in shaping efforts to respond to the consent decree. And a spokeswoman acknowledged that the office is considering restructuring BHDDH, which also has jurisdiction over mental and behavioral healthcare and public hospitals. 

Former BHDDH Director Maria Montanaro has said she does not believe all three kinds of services belong in one department. . 

There is no timeline for a search for a new BHDDH director, according to the spokeswoman, Sophie O’Connell. Rather, the new director of developmental disability services is a top priority, she has said. O'Connell declined to elaborate on any restructuring options EOHHS might be considering. Structural changes would have to be approved by the General Assembly.

Rhode Island Considers Reorganizing BHDDH; Finding "Strong" DD Director Is Top Priority

By Gina Macris

The Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals  may undergo restructuring, if it is determined that a different organization of services would better serve the  needs of it clients, a spokeswoman for the Executive Office of Health and Human Services (EOHHS) confirmed on Friday, Sept. 9  

Asked whether a departmental reorganization is on the table, Sophie O’Connell replied in an email: “No decisions have been made, but we are considering the option to make sure that we are delivering the best quality care and services to some of the most vulnerable people in our state.” 

Before she left in June, former BHDDH Director Maria Montanaro recommended that BHDDH be split up. The Eleanor Slater Hospital should be run by a dedicated board of directors, she said, while mental health and developmental disability services each should have a commissioner under the direct supervision of EOHHS. 

Such sweeping changes would require gubernatorial and legislative approval. On an ad-hoc basis, however, EOHHS has established direct oversight of the Division of Disabilities in recent months, primarily in response to the demands of a federal consent decree. 

O’Connell said there is no timeline for recruiting a permanent BHDDH director while EOHHS and BHDDH work on a plan that would take into account “how we can most effectively blend fragmented program, policy and funding streams to ensure Rhode Islanders are receiving the best possible care and services.”  Rebecca Boss serves as interim director of BHDDH. 

“Secretary (Elizabeth) Roberts as well as the BHDDH and EOHHS management teams are personally committed to ensuring continued progress on the important reforms taking place at BHDDH. This includes the ongoing work to improve services for individuals living with developmental disabilities and to recruit talented DD leadership into the agency,” O’Connell said. 

“Our most pressing concern at the present moment is recruiting a strong leader for the Division of Developmental Disabilities,” she said. 

The developmental disability director’s post is particularly critical as the state tries to comply with the federal consent decree by shifting away from sheltered workshops and segregated day programs toward integrated employment and community-based non-work activities. 

The division has been without a permanent director since July 22 when Charles Williams retired.

Jane Gallivan, who was coaxed out of retirement to serve as interim director of developmental disabilities, will step down at the end of the month because of family responsibilities, according to O’Connell. 

Although Gallivan will remain a consultant – primarily a long-distance one – the state has not announced who will administer developmental disability services in the short term or when a new director might be named. 

 As of Friday, September 9, the post had not been advertised on the state’s employment website. Nor has a search committee been seated.  

In response to repeated inquiries, over the past week, O’Connell said that Gallivan would providemore information Sept. 14 about the search for a director for the division. 

Gallivan, former developmental disabilities director in Maine and Delaware, plans to spend the winter in Florida with her 101-year-old mother, who has been staying on Cape Cod for the summer. 

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.

Task Force Members Say Interviews to Assess DD Needs in RI Apparently Used to Cut Funds

By Gina Macris

Four Rhode Islanders with developmental disabilities who all need nearly constant attention have had their residential funding cut by a total of about $125,000 a year.

The most recent scoring on an extensive questionnaire that is supposed to assess their support needs says they have become much more self-sufficient. Instead of having extensive needs, they now require only moderate supports, according to the results of the questionnaire, the Supports Intensity Scale, or SIS. 

But Tom Kane, the CEO of the agency that runs the men’s group home, says that if he withdraws $125,000 worth of residential staff hours for these men, “someone will get hurt.” 

“It’s not a position these four men should be in, nor should the agency be in this position,” Kane told state officials at a meeting of the Employment First Task Force July 12. 

Professionals acknowledge that, barring a traumatic event, the needs of a person with intellectual or developmental disabilities remain relatively stable over the course of a lifetime. 

Yet one chart prepared in 2015 by a healthcare consulting company under contract with the state shows the level of need changed for 47 percent of clients who had been re-assessed since the Supports Intensity Scale was introduced in 2011. 

For AccessPoint RI, a private service provider, those changes have resulted in a cumulative loss of $970.000 in developmental disability funding, roughly 12 percent of the budget, Kane said. 

If the tool is reliable, the score shouldn’t change dramatically,” Kane said. “Either the tool is not reliable, or you know it was all manipulated” to reduce pressure on state spending, he said.

Jane Gallivan, the interim Director of Developmental Disabilities in the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, said, “We definitely will take a hard look.”

Claire Rosenbaum, Adult Services Coordinator for the Sherlock Center on Disabilities at Rhode Island College, said she has received numerous reports that social workers conducting the SIS interviews challenge the accuracy of answers family members give to specific questions. 

Or, said Mary Beth Cournoyer, a parent member of the Employment First Task Force, the interviewer does not argue with family members’ answers but merely substitutes other ones.  This becomes apparent, she said, when parents review the completed assessment and see that the ratings on needs differ from the ones they had given. 

Cournoyer said parents need training on what to expect from a SIS questionnaire because the answers they give could have unexpected ramifications.  

For example, parents may say that their sons or daughters can dress themselves, when the reality is much more nuanced. Without someone to put away the out-of-season clothes so they are out of reach, individuals with disabilities may dress inappropriately for the weather, she said. They may be capable of dressing themselves, but may sometimes refuse to do so.

Cournoyer indicated that parents don’t realize they need to completely remove from the picture the supports they and other family members provide naturally before they say whether their sons or daughters can perform a particular task. 

Jennifer Wood, the Deputy Secretary of Health and Human Services, said “no topic has come up with more regularity than the SIS. We should have some focus groups.”  

Under order of the U.S. District Court, and to avoid a possible contempt hearing, BHDDH changed its SIS policy July1 –nearly two years after it first agreed to do so -to divorce the assessment of need from funding considerations. 

That new language is intended to resolve a conflict of interest noted by the U.S. Department of Justice in its 2014 findings that the state’s sheltered workshops and segregated day programs violatedthe integration mandate of the Americans With Disabilities Act, The 1999 as spelled out by the  1999 Olmstead decision of the U.S. Supreme Court.  

In a subsequent consent decree designed to remedy the ADA violations, the state agreed to change its SIS policy by Sept. 1, 2014. 

The policy then in place said, in part: “Starting January 1, 2013 BHDDH will assign service tiers (funding allocations) based on the results of an individual SIS assessment. 

A year later, the DOJ said in its findings: 

“Our investigation revealed that BHDDH staff maintains primary responsibility for administering the Supports Intensity Scale, and they are also part of the agency that administers the statewide budget for developmental disability services.This is a seeming conflict of interest because 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  referred to similar warnings from the American Association on Intellectual and Developmental Disabilities, which created the SIS.   

The consent decree prohibits the SIS from being used as a funding mechanism.  

The new state policy, adopted July 1, reads, in part: “All decisions involving SIS tier assignments (levels of need) and any changes to SIS tier assignments are made solely on the basis of individual support needs as indicated by the SIS assessment in a manner that is consistent with individual’s support needs, separate and apart from resource allocation considerations.” 

How the change in policy will play out in practice is not yet clear.

According to a monitor’s report to the court in August, 2015, the state reported making the necessary changes in the administration of the questionnaire, including the re-training of interviewers, but complaints from parents have persisted. 

The disagreements over the SIS have resulted in families filing appeals. Most appeals are granted, according to Charles Williams, who retires as Director of Developmental Disabilities July 22. Data on the number of appeals, successful or otherwise, is not readily available. 

Wood and Gallivan promised members of the Employment First Task Force they would get to the bottom of the issue.                               

The Employment First Task Force, created by the consent decree, consists of members representing community organizations, adults who themselves have disabilities, and parents.   The task force, which holds public meetings, is intended to serve as a bridge between state government and consumers and families. 

The next meeting is August 12 at 2 p.m. at the Community Provider Network of Rhode Island, 110 Jefferson Blvd., Warwick.

Jane Gallivan Settling In as Interim Director of Developmental Disability Services in RI

Jane Gallivan  Photo by Anne pETERS

By Gina Macris

Six days into her new role as an acting director of developmental disabilities in Rhode Island, Jane Gallivan said she has met an “extremely welcoming staff” who are “ready to improve what they’re doing.” 

“It’s a staff that has had a rough time. Underneath all the workload issues, trying to get the work done, they have some good values,” she said. 

“They are kind of desperate for leadership,” she said, from “someone with depth of experience with developmental disabilities.”

“I am very impressed with the staff, but they need a vision,” she said. 

Gallivan, who has great breadth and depth of experience in developmental disability issues elsewhere, said she’s “not sure that the focus has been what it needs to be” in Rhode Island. Some people are “nervous” about change, she said. 

Gallivan spoke July 12 at the monthly meeting of the Employment First Task Force, a committee representative of community agencies and parents that is intended to serve as a bridge between state government and individuals with developmental or intellectual disabilities and their families. 

The Employment First Task Force was created by a 2014 federal consent decree in which Rhode Island agreed to correct violations of the Americans with Disabilities Act by moving away from sheltered workshops toward integrated, community-based employment and other activities. 

 In its 2014 findings in the sheltered workshop investigation, the U.S. Department of Justice said, among other things, that developmental disability social workers at the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) were small in number and lacked the training and specialization needed to work with their clients, particularly in the area of job supports and community integration. 

Charles Williams, the soon-to-retire director of developmental disabilities, says the average caseload for each of the 20 social workers in case management is about 190 clients. 

Gallivan, who has more than three decades’ experience as a state-level developmental disabilities director in Maine and Delaware, will help  select someone to fill that role in Rhode Island, according to Jennifer Wood, Deputy Secretary of Health and Human Services. 

“We are very grateful to have her,” said Wood. 

Kevin Nerney, chairman of the Employment First Task Force, asked if the group could be represented on the search committee for the new developmental disabilities director. 

Wood, who is leading an interdepartmental team charged with turning around developmental disability services and complying with the consent decree, said, “I can’t make any firm commitments today.” (Click here for article on Wood and her team.)

“I think it is appropriate, and I will keep it firmly in mind as that search committee is selected,” she added. 

Gallivan, who said she values the stakeholder group, suggested that task force members make a list of the characteristics they believe the next developmental disabilities director should have and send them to her. Change cannot occur without a strong community advocacy group, Gallivan said.  

Gallivan worked for 28 years as developmental disabilities director in Maine, where she oversaw implementation of a federal consent decree focused on de-institutionalization. Besides her consent decree experience, she also has dealt with issues like those Rhode Island faces, including the need for supported employment, shared living arrangements, and the introduction of electronic records. 

She said she worked for 7 or 8 governors in Maine, before “the current governor and I parted ways.”  Gallivan moved into the same position in Delaware, intending to stay two years, and remained for four. 

Gallivan, who is spending two to three days a week in Rhode Island, said, “I love the work,” but “my family is not happy” with her decision to accept a temporary stint here. Her responsibilities include her 101-year-old mother, Gaillivan said, so she’ll “not be coming out of retirement,”

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

Jennifer Wood    Photo by Anne pETERS

Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jane Gallivan, Experienced Administrator of DD Services, To Help RI With Transition

By Gina Macris

Jane Gallivan, a veteran state-level administrator of developmental disability services, will guide Rhode Island’s compliance with a federal consent decree mandating greater integration of adults with intellectual challenges in their communities.

Gallivan, who was instrumental in shaping compliance with a long-running federal consent decree in a de-institutionalization case in Maine, has agreed to serve as a consultant through December, according to Jennifer Wood, Deputy Secretary of Health and Human Services.

Wood said in a recent interview that it is not yet clear whether Gallivan would also agree to work as an interim director of developmental disabilities while the state searches for someone to succeed Charles Williams, who will retire July 22.

It was under Gallivan’s watch in Maine in 2010 that a federal court dismissed the second of two consent decrees resulting from a 1978 class action lawsuit over conditions at the Pineland Center in New Gloucester, an institution for individuals with disabilities that closed in 1996.

The original consent decree was succeeded in 1994 by another decree that focused on expanding community-based services. Gallivan served as Director of the Office of Cognitive and Physical Disability Services in Maine from 1982 to 2011, according to her LinkedIn profile.

From Maine she went to Delaware, where she directed developmental disability services until her retirement in February of this year.

Last December, she was honored by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) for her pioneering work in both Maine and Delaware, and as a member of the NADDDS Board.

Gallivan began her career working directly with persons with developmental disabilities, according to NASDDDS.

In addition to her familiarity with consent decrees, she has experience developing other innovations that Rhode Island wants to implement, according to Deputy Secretary Wood.

These areas include:

•        Supports for community-based employment

•        Shared living arrangements

•        Introducing electronic records

Wood said Maria Montanaro, the outgoing director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), was referred to Gallivan through her involvement in NADDDS.

Montanaro made arrangements with Gallivan to serve as a consultant before Williams announced that he is retiring as director of the BHDDH Division of Developmental Disabilities, Wood said.

EOHHS is searching for successors to both Williams and Montanaro. 

(This article has been updated to reflect the length of Gallivan's contract.)