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. 

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

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,”

 

 

 

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.)

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

Photo by Anne Peters 

Photo by Anne Peters 

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Charles Williams to Retire; Second RI Developmental Disabilities Official to Announce Departure

By Gina Macris

Williams                                          Image courtesy BHDDH

Williams                                          Image courtesy BHDDH

Charles Williams, Director of the Division of Disabilities of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), confirmed today (June 3) that he will retire July 22.

 Williams is the second high-profile figure within BHDDH to announce his departure in two days. On June 2, the department director, Maria Montanaro, announced her resignation effective June 24. 

Williams, who joined BHDDH in 2005, said he had always planned to remain in state government for ten years, long enough to become vested in the state pension system. Williams marked his 10th anniversary in state government last October and celebrated his 71st birthday in January. 

In a telephone interview, Williams said that his retirement has nothing to do with either the federal government’s ongoing intervention in daytime programs for adults with developmental disabilities or the recent death of a resident in a group home that is both licensed and run by the state. 

He said the department plans to hire a chief operating officer and an employment specialist to fill out an administrative team in the developmental disabilities unit. Those moves, he contended, will help ensure continuity as BHDDH complies with a 2014 federal consent decree. 

Another position created by BHDDH to respond to the consent decree is that of chief transformation officer. 

Reached by phone, Andrew McQuaide, the transformation officer, declined any comment on whether he will stay with the department. 

BHDDH must comply with a series of strict deadlines in the coming months to start helping more persons with intellectual or developmental disabilities find regular jobs and enjoy activities in their communities, or face possible contempt hearings in U.S. District Court over violations of the Americans With Disabilities Act. 

Title II of the ADA, reaffirmed by the 1999 Olmstead decision of the U.S. Supreme Court, is a sweeping mandate requiring states to offer services to people with intellectual or developmental disabilities in the least restrictive environment appropriate for each individual.  

The developmental disabilities division also faces scrutiny of 25 group homes that are both licensed and run by BHDDH. In addition to supervising the developmental disabilities division, Williams heads the residential unit, called Rhode Island Community Living and Supports (RICLAS.) 

A native of Connecticut, Williams had worked as head of preventive services in mental health, behavioral healthcare and developmental disabilities for the state of Missouri before coming to BHDHHD to take a similar position.  

Montanaro put Williams in charge of developmental disabilities when she became Department director, in February, 2015, but did not select a new chief for RICLAS. 

Since early April, it has become evident that Jennifer Wood, Deputy Secretary of Health and Human Services, has taken the lead on the state’s response to the consent decree, providing much of the state’s testimony during a day-long evidentiary hearing on compliance issues in U.S. District Court. 

More recently, when state Senator Louis DiPalma (D-Newport, Middletown, Tiverton and Little Compton) asked for information about BHDDH, he said he was invited to a meeting hosted by Wood; transformation officer McQuaide; the Consent Decree Coordinator, Mary Madden; and Dacia Reed, policy director of the Rhode Island Children’s Cabinet. 

Madden’s job was created at the insistence of the court monitor in the federal case as a secretary-level position with authority to enforce cooperation among three agencies responsible for compliance with the consent decree. Madden reports to the Secretary of Health and Human Services, Elizabeth Roberts, who is also head of the Children’s Cabinet, which was revived by Governor Gina Raimondo in 2015. 

The Children’s Cabinet has an interest in the consent decree because the decree is designed to protect teenagers with developmental disabilities as well as adults. Teenagers often struggle with the transition from special education in high schools to the adult system of developmental disability services. 

Asked about Wood’s future role in connection with developmental disabilities, a spokeswoman for EOHHS issued this statement today: 

“We remain fully committed to meeting the goals of the Consent Decree to provide integrated, community based services for Rhode Islanders living with developmental disabilities. Compliance with the Consent Decree has improved significantly under Director Montanaro’s tenure, and EOHHS Deputy Secretary Jennifer Wood will continue to work with Secretary Roberts and the team at BHDDH, under the leadership of Interim director Becky Boss, to ensure all requirements are met going forward. 

Additionally, Governor Raimondo has included significant funding in her proposed budget, including investments in integrated services. In the weeks ahead, Director Montanaro is committed to working with leaders in the General Assembly to secure the additional funding that Governor Raimondo has recently advocated for to provide higher-quality services for Rhode Islanders living with developmental disabilities.”

 

 

Bigger DD Budget Appears "Safe", Families Upset by Lack of Funding and Services

Photo by Anne Peters

Photo by Anne Peters

Donna Martin, Executive Director of the Community Network of Rhode island, left; and Kevin Nerney, Chairman of the Employment First Task Force, right. 

By Gina Macris

Despite positive signals about more state funding for developmental disability services in Rhode Island, members of the Employment First Task Force acknowledged May 10 that in general, families remain angry and upset with officials of the state’s primary service agency, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Task Force members who keep tabs on developmental disability issues on the General Assembly’s legislative agenda said that Governor Gina Raimondo’s plan for increased funding appears to be safe as the legislature approaches the final three or four weeks of its session.

Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), said she heard recently that more legislators  grasp the idea that “the consent decree is something they need to pay attention to,” even if they don’t understand all the details.

“That’s good to hear,“ said Charles Moseley, assigned to monitor the state’s implementation of a 2014 consent decree between the state and the U.S. Department of Justice. In the consent decree, the state agreed to reorganize daytime services for the developmental disabled to focus on community-based jobs and other activities to comply with the integration mandate of Title II of the Americans With Disabilities Act. (ADA)

U.S. District Court Judge John J. McConnell, Jr. has promised “swift and dramatic” action if the General Assembly does not provide sufficient funding to meet the immediate requirements of the decree.

At Tuesday’s task force meeting, informal updates on other disability-related topics suggested that, in general, families apparently are not yet realizing benefits of the consent decree, now at the start of the third year of its ten-year span.

There is widespread dissatisfaction among families about issues that reflect chronic underfunding, complicated by a lack of communication or miscommunication from the state, according to the tenor of comments shared at the meeting.

Kevin Nerney, chairman of the task force, expressed concern about individuals with developmental disabilities who had difficulty finding suitable services and had received letters from BHDDH saying they had been cut from the rolls because they hadn’t used their allocations.

Photo by Anne Peters 

Photo by Anne Peters 

Some of the concerns go back more than two years. Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities, (right) said she understood from informal conversations with BHDDH officials that about 400 individuals had received such letters as of February, 2014.  In the fall of 2015, when the topic was revisited by the Rhode Island Developmental Disabilities Council, a BHDDH official said another 50 individuals had been sent similar letters.

Rosenbaum said after Tuesday’s meeting that she understood BHDDH social workers tried to reconnect with individuals who they knew had been looking unsuccessfully for services.  The task force did not have more recent information on how many of those removed from the BHDDH client roster may have been reinstated.

Efforts to get additional information from BHDDH were unsuccessful Wednesday.

About two dozen private agencies providing most of the supports in Rhode Island to individuals with intellectual or developmental disabilities are operating at a loss and routinely tell prospective clients their programs are full.

Rosenbaum also said young adults eligible for BHDDH services are continuing to leave school and sit at home for months at a time because suitable adult programs are unavailable.

Although a spokeswoman for the state has said eligibility for adult services begins at age 18, Rosenbaum reiterated that, in actuality, BHDDH does not determine eligibility until about four to five months before applicants leave school or turn 21, leaving insufficient time to arrange services.  

In many cases, school departments provide services for intellectually and physically disabled students until they turn 21. Even so, under provisions of Rhode Island law, students with intellectual disabilities are eligible for adult services at the age of 18. Until students leave high school,  the consent decree envisions adult services as supplementary, such as facilitating and supporting vocational assessments and employment experiences, or actual part-time or summer job placements.

In addition, the adult service system would pay for the time of social workers and other professionals to help students and their families formulate individualized adult programs and find service providers.

 (BHDDH is in the process of negotiating a contract with the Rhode Island Parent Information Network to provide support to some young adults and their families who are grappling with transition issues, according to RIPIN’s representative on the Task Force, Sue Donovan.)

Rosenbaum, meanwhile, has filed a statement with U.S. District Court describing the problem, which figured in testimony in an April 8 evidentiary hearing before Judge McConnell. McConnell is poised to consider a request for corrective action to implement the consent decree. The request has not yet been filed.

While BHDDH officials insist there have been improvements in an interview procedure connected with periodic reviews of individual funding levels, Mary Beth Cournoyer, (below), a parent representative on the Task Force, said those assertions are not borne out by an informal survey she did of parents and others familiar with the process.

Photo by Anne Peters

Photo by Anne Peters

Cournoyer said that she knows interviewers have been told “not to badger parents” by challenging the answers they give about their son’s or daughter’s needs.

Nevertheless, the interviewers continue to do so, said Cournoyer,

She said she has heard enough to recognize a pattern of argumentative interviews followed by reduced funding levels.

Others have complained about the so-called Supports Intensity Scale (SIS) interview and the associated funding decisions,  most recently at a “town hall” meeting April 27. There, the mere mention of the “SIS” by a BHDDH official triggered a round of laughter in an audience of about 100 people, mostly family members.

On that day, Charles Williams, director of the BHDDH Division of Disabilities, told parents to file an appeal if they disagree with the SIS results. Almost all, if not all, appeals are granted, he said.  

The SIS interview, based on a set of standard multiple choice questions, was designed by the American Association of Intellectual and Developmental Disabilities to gauge the supports or services needed to help an individual achieve his or her goals.

It does not take into account the risk of removing those supports.

The DOJ has found that that BHDDH has used the SIS to determine funding levels, and the consent decree prohibits the continuation of that practice.

The Employment First Task Force, required by a provision of the consent decree, is a group representing community agencies, individuals with disabilities and their families. Among other things, it was intended to serve as a bridge between state government and the public.

But public reaction to the consent decree, most prominently the backlash at the recent “town hall” meeting, has led Nerney, its chairman, to question the role of the task force as a filter for communications from the state.  

He said there hasn’t been an open line of communication with the state in the past, and he told the DOJ that “I don’t think this group should be a funnel.” Expanding on this point, Nerney said the real need is for “actual participation” in the plans that emerge from the state to comply with the consent decree.

“When BHDDH develops a plan, they should have stakeholders at the table,” he said. The more participants at the table, the more stakeholders there will be in the outcome, he said.

Others agreed. “Everybody wins when we strategize and work together,” said Kim Einloth, senior director at Perspectives Corporation, a private service provider.

Tom Kane, CEO of Access Point RI, another service provider, said he would like to have a plan “shared with everybody and shaped by everybody.”

 “We would like to have the ability to anticipate so we can pass information along as well. I, for one, am tired of being reactive,” he said. 

RI Families Blast Consent Decree and DD Services

By Gina Macris

Officials of Rhode Island’s developmental disability system hit blowback Wednesday from family members who oppose a 2014 federal consent decree that requires the state to move from sheltered workshops and segregated day programs to community-based work and leisure activities.

Debra Feller

Debra Feller

Debra Feller, whose son has developmental disabilities, challenged the basis of the decree, saying it is contrary to the very law on which it is based, the Americans With Disabilities Act (ADA), by limiting, rather than expanding, opportunities for employment.

The decree, “violates the ADA“ for people like her son, who cannothandle outside employment, Feller said. She also contended that“sheltered workshops are being allowed to deteriorate at the expense of the consent decree.”

Michael Carroll, who works at a day facility in Middletown run by the James L. Maher Center of Newport, mocked a consent decree mandate that the state help adults with disabilities find and keep jobs in the community.

“The emperor has no clothes,” Carroll declared. “These jobs don’t exist. What happens then?”

The “same individuals who were working before at subminimum wage are now doing nothing,” Carroll said.

Their comments came during  a two-hour “town hall” meeting at the Buttonwoods Community Center on West Shore Road in Warwick, where about 100 consumers, their families and state officials discussed both the philosophical as well as the practical underpinnings of the consent decree.

The decree was signed after the U.S. Department of Justice found Rhode Island violated Title II of the ADA because it unnecessarily segregated adults with developmental disabilities in day programs or workshops that paid sub-minimum wage.

Title II of the ADA, underscored by the 1999 Olmstead decision of the U.S. Supreme Court, says that services must be provided to individuals with developmental or intellectual disabilities in the least restrictive setting that is appropriate.

Maria Montanaro, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), was to lead the session in Warwick, but she was ill Wednesday. Other BHDDH officials, including Andrew McQuaide, chief transformation officer, and Charles Williams, director of the Division of Developmental Disabilities, responded to the comments.

Thee sister of a man who is significantly impaired said the employment mandate of the consent decree was being carried out to an illogical extreme, at least in her brother’s case.

Lidia Goodinson said her brother is 56 years old and “doesn’t know the concept of work. ““Nobody would expect a two year-old to go out and get a job,” she said.

And yet her brother’s social worker told her that “to get funding, he has to look for work.”

Williams, of BHDDH, said, “Your response is to say that ‘I don’t believe he can work.’ “

Goodinson, however, said she did make herself clear. Nevertheless, the social worker said, “This is what the state requires,” according to Goodinson.

Williams asked Goodinson to give him the name of the social worker after the meeting.  

When Debra Feller asked whether “a sheltered workshop is a reasonable or appropriate environment for anybody,” the BHDDH transformation chief, McQuaide, said:  “The consent decree says it is not.”

McQuaide said there are many individuals with developmental disabilities who can and want to work in the community but can’t access the supports they need. The consent decree is designed to give them that choice.

“Nobody’s arguing about that,” Feller replied, but individuals like her son “can’t be left out of the conversation, either.”

The government is “stepping on their rights by saying they can’t be in a sheltered workshop,” Feller said. The audience applauded her remarks.

 McQuaide said the Department of Justice will say the consent decree “does not close sheltered workshops, but effectively it does.”

He said the state still has sheltered workshops, but at some time in the future, the state will no longer fund those.

He agreed with Feller that a sheltered workshop can provide space for a meaningful activity and foster long-lasting relationships, but he said those same meaningful relationships and activities can occur in the community.

As to Michael Carroll’s challenge that community-based jobs don’t exist, McQuaide said the employment targets in the consent decree are not “so astronomical” as to be difficult to achieve.

McQuaide scotched a rumor that the consent decree requires the state to close all segregated day facilities.

One center in Bristol is closing because its neighbor, Roger Williams University, wants to buy the property and the state has agreed to sell it, McQuaide said.  He said some of the people who attend that program will go to the Middletown center operated by the Maher Center and others will have community-based day programs.

McQuaide, after hearing the comments during the town meeting, said that “we have to do a much better job communicating about the consent decree.”  He offered to give Feller contact information for DOJ lawyers.

At the very least, the families’ comments underlined a gap between the promise of the consent decree and its day-to-day implementation in a service system hindered by poverty-level wages for professional staff workers and restrictive rules that prohibit flexibility and innovation.

Between 2008 and 2011, funding for developmental disability services was cut 20 percent, according to statistics presented in February to the state Senate Committee on Health and Human Services by the director of the Sherlock Center on Disabilities at Rhode Island College.  

A. Anthony Antosh said a smaller percentage of individuals with developmental disabilities had community-based jobs in 2015, a year after the consent decree was signed, than had been employed earlier at minimum wage or higher.  

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

After the consent decree was signed in 2014, sheltered workshops began closing abruptly under pressure from a previous BHDDH administration. Private agencies strapped for cash had no alternative programs already in place to support their clients in the transition to work and leisure activities in their communities.

At the Buttonwoods Community Center on Wednesday, BHDDH's Williams touched a nerve when he told parents they needed to be frank about their loved ones’ support needs during a periodic assessment called the Supports Intensity Scale (SIS).

Debra Feller said she was direct but “the SIS intake person refused to accept my answer,” a comment which again drew applause from the audience.

“I asked, ‘How long before I get this back?’ “ she said.  The BHDDH worker told her she didn’t know, “because I didn’t answer the questions the way she wanted,” Feller said.

The Department of Justice found that that the SIS was being used improperly as a funding mechanism. The multiple choice questionnaire was developed by the American Association of Intellectual and Developmental Disabilities as a guide in defining the supports necessary to help a particular person achieve his or her individualized goals.

The consent decree requires an outside health consulting firm to do an annual analysis of the way BHDDH uses the SIS and to submit the report to the independent court monitor in the case.

Devlin Allen, who hosts a man with developmental disabilities as a shared living provider, said that after a recent SIS, his client’s funding was cut by $8,000 a year, a 24 percent cut in reimbursement, which makes it “very difficult to maintain that  person in my home.” 

“They’re cutting the funding because we’re doing a good job with an individual,” he said. The SIS should take into account that if the supports are removed, a client’s level of need will increase, he said.

Williams told Allen to file an appeal. Almost all, if not all, appeals are granted, Williams said.

In closing, McQuaide said Montanaro, the department director, would reschedule her appearance for sometime in May. 

"Mythbusters" Have Fun Delivering Facts About Consent Decree to Audience of Peers

Natalie Bacon, left, and Meghan O'Leary, right, singing "I'm the Boss of Me," with original lyrics set to the tune Folsom Prison by Johnny Cash. In the background, Christopher Pawlyk plays the guitar. 

By Gina Macris

About a dozen adults with developmental disabilities and their helpers combined hard facts and fun as self-styled “Mythbusters” Monday, March 28 to counter rumors and half-truths about the complicated federal consent decree that demands they - and thousands of others - be more fully integrated into their Rhode Island communities.  

The narrated show, put on by the current leadership class of Advocates in Action, played at the Crowne Plaza in Warwick before a crowd of about 200 people, many of whom receive state services, just like some of the presenters. Family members, support staff, and friends also attended.  

The spring statewide meeting, an annual event, offered the students a chance to practice emerging skills in advocating for themselves and others as they wove together videos, music, and live speaking parts. The leadership class, which concludes in June, offers a 10-month learning experience for Rhode islanders with developmental disabilities every year. 

The first myth on the agenda, as explained by Amy Ethier, was that “Department of Justice came to Rhode Island and said that everyone who has a dd (developmental disability) has to work. If we don’t work, we’ll lose our services.”  

That statement is not true, said Andrew Whalen, who works part-time at Advocates in Action.     

According to the consent decree, “those people who want to work will get the support they need to work” in jobs paying at least minimum wage, he said. “People can choose not to work, but it needs to be an informed decision.”  

To make the point that life experience is at the heart of an informed decision, Deb Kney, the administrative director of Advocates in Action, presented  a take-off on the long-running Life cereal television commercial, in which three-year-old “Mikey” finally tries the food that is “supposed to be good for you” after his two friends refuse to take a bite.    

courtesy advocates in action

courtesy advocates in action

In the video, Keith Wilcox takes on the role of “Mikey,” who is flanked by friends egging him on to eat the cereal. The final message, delivered poster-style on a mock cereal box: ” Real Life Tastes Great! Sample Some Today!”  

Though it was emphasized during the presentation, the state does not now have enough resources in place to readily help everyone with a developmental disability who wants to get a job, or to immediately offer real life experiences to everyone who needs to make an informed decision about applying from a waiver from work.  

The way the state will pay for implementing the consent decree is one of the key issues that has been unfolding since January in hearings in U.S. District Court in Providence.  

Another thing the court wants to see is an assurance that services will fit an individual’s needs.  

It’s not one-size-fits-all, the leadership class impressed upon its audience.  

Those receiving services, according to the consent decree, are entitled to an individualized service plan that places each person’s needs, strengths and interests at the heart of planning and delivering services.   

Jim Petrone, who uses a motorized wheelchair and a communication device, demonstrated that point in a pre-recorded video which shows him listening for a minute while several people talk about his likes rather than asking him directly. Then Petrone conspicuously turns up the volume on his communication board and a deep voice booms: “Attention! Excuse me. This is my meeting and I need to talk now.”   

courtesy advocates in action

courtesy advocates in action

At the other extreme,  a video clip dispelled the myth that the mandate for individualized supports includes luxuries. Christopher Pawlyk donned a lei, oversized sunglasses and a flower-topped hat trimmed with halo of fake fur to deliver this line: “Well, this person wants to take an individual vacation to Hawaii two to three times a year.”

Medicaid does not pay for “stuff,” but for the supports and services needed for people to have access to experiences in their communities, the leadership class emphasized.  

The group also busted the myth that Rhode Island is closing all its group homes AND moving everyone into shared living arrangements with individual families.  

Class member Amanda Campbell followed up with the facts. “It is true that the state wants you to become more educated and informed on shared living, but it’s your choice. You have the right to live where you want to live,” she said.  

Advocates In Action invited an expert on shared living, Joanne Malise, to speak on that housing option. She described it as a “mutual choice” involving a family and the individual looking for a place to live.  

“You get to know each other and both people decide to live together,” she said. Malise is director of Living Innovations, an agency that specializes in supporting shared living arrangements.  

For those seeking a different option, financial realities make house-hunting a bit more complicated. Questions from the audience indicated people with developmental disabilities are having a difficult time securing subsidized apartments for which they are eligible.  

People living in group homes who may not be candidates for shared living arrangements may have to move anyway if their home is closed during the state’s shift to shared living.  

Charles Williams, director of Social Services for the Division of Disabilities in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said the group homes must give residents 30-days’ notice before a house closes. The agency is obligated to continue to provide support until alternate housing is found, he said.   

While people with developmental disabilities have the right to choose the agency which serves them, the state does not reimburse them for all their costs. That issue is also embedded in the federal court case. Financial constraints have prompted the state’s private providers to refuse new clients, particularly if the individuals have extensive, costly needs.