New UHIP Computer in RI Seems to Undermine Court-Ordered Timely Benefits For DD Population

By Gina Macris

andrew whalen                                                  all photos by anne peters

Andrew Whalen, a 31 year-old Rhode Islander on the autism spectrum, applied for support services in the wake of his mother’s death in January. He’s still waiting to hear whether he is eligible.

When a psychologist interviewed him Nov. 16, she said the state’s Division of Developmental Disabilities was backed up addressing cases involved in a federal consent decree and that his application was “not an emergency,” Whalen said.

Last week, one of his sisters took him to the Department of Human Services (DHS) to check on the separate application he filed two months ago for food stamps. He said he learned that the state’s new $364 million computer system had deleted his records and the only way he could remedy the problem was to file for benefits all over again. 

Whalen represents adults with developmental disabilities on the Employment First Task Force, created by a 2014 federal consent decree as a bridge between the state and the community as Rhode Island moves to comply with the Americans with Disabilities Act.

Under terms of the consent decree, Rhode Island must move away from segregated sheltered workshops and day programs toward supported employment in the community and integrated non-work activities over a ten-year period.

Whalen explained his plight Tuesday, Dec. 13, to his colleagues on the task force at a meeting in Warwick, and to the federal court monitor in the consent decree case, who was listening via conference call.

The monitor, Charles Moseley, wanted to know how many applicants for adult developmental disability services might be affected by the computerized Unified Health Infrastructure Project. UHIP, as it is known, is supposed to process all the state’s social service benefits, including the Medicaid money used for developmental disability services.

Sue Donovan of the Rhode Island Parent Information Network (RIPIN) ventured an estimate – about 100 – but asked Moseley to confirm figures with the state. 

RIPIN works with families of high school students with developmental disabilities who are making the transition to adult services. Donovan said she knows of one person who was authorized by BHDDH to start receiving developmental disability supports September 1, but the Medicaid funding didn’t actually didn’t actually clear UHIP until Monday, Dec. 12.

Donovan said there are 23 young adults who have been deemed eligible for developmental disability services who are waiting for their funding to come through. 

In addition, about 83 young people are expected to be found eligible and are “heading for the same problem,” she said.

“I’m sure the Division (of Developmental Disabilities) has a better idea of those numbers,” Donovan said.

“I will look into that,” Moseley said.

“It’s a shame. It’s a disgrace,” Donovan said of the situation.

State Says It Is Monitoring Flow of DD Benefits

On Wednesday, Dec.14, a spokeswoman for Jennifer Wood, Deputy Secretary of Health and Human Services, said that “we are individually monitoring the services received by every DD (developmental disabilities) client who has been determined eligible for Medicaid services to ensure that their Medicaid coverage is working correctly."  She did not offer any figures on those who might be affected by the UHIP problems.

“BHDDH social workers are also always available to their clients if they are experiencing any issues with any of the benefits they are receiving,” the spokeswoman said.

Developmental disability officials have publicly acknowledged in recent months that even without a crisis like UHIP, social workers have a hard time keeping up with the needs of clients in their care. The average caseload for each social worker is 205, according to Jane Gallivan, a developmental disabilities consultant to the state.

Rhode Island has been under a federal court order to see to it that individuals with developmental disabilities receive eligibility decisions and begin services in a timely manner after they complete high school.

In response to the order, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has said that at the end of September, it cleared a backlog of applications that earlier in the year had numbered about 250.

BHSSH also established strict timelines for responding to applicants going forward, determining within 30 days whether they were eligible, needed to submit additional written information, or needed to schedule an interview. 

Whalen’s experience – he waited 10 months to be interviewed by the psychologist – raises new questions about how strictly BHDDH is following its new eligibility timelines, not only for high school students moving to adult services, but for applicants of all ages and circumstances. 

If BHDDH isn’t meeting its timelines because of UHIP, Donovan said, maybe the judge in the consent decree case, John J. McConnell, Jr. of U.S. District Court, can do something to “help move the state to get this DHS system corrected.”

Wood’s spokeswoman declined to address Whalen’s situation publicly, citing confidentiality laws. She insisted that BHDDH is working within court-approved time frames to determine eligibility.

The American Civil Liberties Union has filed its own class action lawsuit against the state in U.S. District Court in the last week over the UHIP troubles with a focus on the food stamp program, saying the denial of benefits puts thousands of households “at imminent risk of going hungry as a result of being denied needed assistance to help them feed their families.”

Bandusky

Ray Bandusky, executive director of the Rhode Island Disability Law Center, told task force members Tuesday that Anne Mulready, one of the center’s managing attorneys, and Linda Katz of the Economic Progress Institute, have met with Governor Gina Raimondo to emphasize the effect the computer problems are having on poor and disabled people.

One of the main points Mulready made, according to Bandusky, was that “the kind of people who need assistance are not going to go online” to fill out a form.

Last week, Raimondo acknowledged that it was a mistake for the human services department to lay off 15 workers and transfer another 30 to the Department of Children, Youth and Families (DCYF) just before it rolled out the new online application process. She has ordered the agency to hire 35 temporary workers to address thousands of applications that are in limbo.

At the task force meeting, Claire Rosenbaum of the Sherlock Center on Disabilities at Rhode Island College said that some of the workers who got “bumped” to DCYF had many years’ experience in resolving the very problems that DHS now faces. That expertise is gone, she said.

Deb Kney, director of Advocates in Action, said that in Whalen’s case, “It took him a couple of months just to be told he had to start over” in the food stamp application process. Advocates in Action employs Whalen to help empower others with developmental disabilities to become advocates for themselves.

A parent on the task force, Mary Beth Cournoyer, said she knows a mother whose son has been found eligible for developmental disability services but who has been “sitting at home for a year” because his family cannot find providers.

After Whelan recounted his problems, Kiernan O’Donnell of the Fogarty Center, a service provider, remarked that “a lot of people focus on transition (to adult services) but people in their twenties, thirties and forties are being marginalized.”

At the same time, he said, providers are still hearing stories of social workers telling clients of  retirement age- in one case an 85 year-old man – that they must seek employment to continue to receive developmental disability services.

O'Donnell said the state's resources would be better spent helping the many individuals who want to find jobs.  

The state’s consent decree coordinator, Mary Madden, has said publicly that no one will force individuals to work. 

Concerns Expressed About Supported Employment Incentives

To satisfy the federal court, BHDDH is planning to roll out a supported employment incentive program in the new year, with a provider fair January 6 that is intended to help individuals seeking employment connect with support services.

The incentive program is funded by $6.8 million for the current fiscal year, but none of it has been spent. 

McConnell, the consent decree judge, had ordered the state to implement a supported employment incentive program by Aug. 1.

Twenty three agencies have applied to provide supported employment services eligible for the incentives, according to Donna Martin, executive director of the Community Provider Network of Rhode Island.

Martin, O’Donnell, and Kim Einloth of Perspectives, another provider, all expressed major concerns about a Catch-22 in the incentive program.  

Einloth said private service providers don’t have the resources to hire new staff and train them to provide supported employment services, but the state’s incentives are bonuses that would not kick in until certain incremental goals were met.

Kim Einloth

For example, Einloth said, the one-time bonus for training a supported employment specialist, $810, does not cover the cost of the training. 

The program is “not sustainable,” she said.

Einloth questioned whether the providers who attend the fair in January will be ready to present themselves to new clients. 

O’Donnell said, “I wonder if they are satisfied with commitment to people they already have,”

Martin replied, “You are spot-on with that, Kie.”

O’Donnell and Einloth, members of the task force, also are co-presidents of the Rhode Island Chapter of the Association of People Supporting Employment First (RIAPSE), which promotes “real jobs at real wages” for individuals with disabilities.

Claire Rosenbaum

Rosenbaum, of the Sherlock Center, offered the perspective of so-called self-directed families, who organize individualized support services for only one person.

While an agency might get $810 after it trains a job developer on the assumption the developer works with ten clients, the family would only get $81, she said.

Because agencies routinely turn away new clients, self-direction has become the only option for many families who otherwise might not choose that route.

Rosenbaum said the advisory sent by BHDDH to providers about applying for the incentive program did not reach all self-directed families, and those who did receive it found it so technical that they couldn’t understand it and set it aside.

Einloth said the self-directed families are not alone. Even for professionals in the field, “it’s been a rocky road trying to understand the plan, because it’s changed so many times.”

The state had a proposed contract for provider agencies, but the contract was “pulled” last week, Einloth said. Nevertheless, a training session for providers on how to submit bills for the reimbursement program will move forward next week, she said.

BHDDH has indicated some money could be available to defray start-up costs, but has never defined that amount, Einloth said.

Martin said she was disheartened that the $6.8 million allocated by the General Assembly for supported employment  remains out of the reach of providers who could deliver results.

Moseley asked Martin to follow up in a separate conversation.

Over the phone, he said he saw “a lot of work” ahead.

Wood’s spokeswoman said Wednesday that it is important to note that the monitor and U.S. Department of Justice approved the supported employment incentive program. .

“We are committed to maintaining an open dialogue and partnership with the provider community moving forward,” said the spokeswoman, Sophie O’Connell.

“As always, we encourage providers and others to share concerns and feedback directly with us so we can work together to address them,” O’Connell said.

(This article has been updated to reflect the fact that the supported employment incentive program passed the review of the court monitor and the DOJ.)

NEW: Podcast on Olmstead Consent Decree in RI

Frank Prosnitz, host of Open Forum on Radio Station WADK in Newport, RI, asks reporter Gina Macris what she's learned about the federal consent decree on developmental disabilities in Rhode Island . . . after a little reminiscing about news-gathering in general. 

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

Christine Vriend, Senior Trainer for AAIDD

By Gina Macris 

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

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

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

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

Mincey

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DiPrete

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI EOHHS Clarifies Status of Probationary DD License Involving Maher Center in Newport

By Gina Macris

The James L. Maher Center of Newport is correct in saying that the state has not downgraded the developmental disability service license of the entire agency, a spokeswoman for the Rhode Island Executive Office of Human Services (EOHHS) said Tuesday, Nov. 15. 

The Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has put one group home, at 228 Carroll Ave., on conditional, or probationary, status as a result of an internal investigation that found its staff abandoned a resident at Newport Hospital May 3, according to the spokeswoman.

But Jennifer Wood, the Deputy Secretary of Health and Human Services, says that "the accountability for the failure to comply with regulations and requirements at the Carroll Avenue group home resides with the management of the agency as a whole." 

The Maher Center has appealed the conditional license, which lasts for six months. During that period the agency is subject to heightened oversight by the state, according to Wood.

On Nov. 16, Wood elaborated: "In the currently pending matter BHDDH will prove that the agency did not operate that home consistent with the regulations, and unless they prove that they are operating consistent with the rules during the conditional license period, they may not be able to retain a license to operate that home in future.  

"If we also learn that other homes for which they are licensed are not operating consistent with the regulations, then we would take additional action regarding the licenses for those other facilities. We are very committed to more closely supervising the agency and in particular the management of the agency regarding the appropriate operation of the Carroll Avenue group home as well as all homes operated by the agency," Wood said Nov. 16.

The Maher Center will have its say before an EOHHS hearing officer, according to the EOHHS spokeswoman, but that session has not yet been scheduled. 

The Maher Center’s executive director, William Maraziti, issued a statement Nov. 10 denying the agency has ever abandoned any client. 

The agency is “extremely disappointed” with a “flawed investigation” that led to “unsubstantiated conclusions” by the BHDDH investigatory unit, according to the statement Nov. 10. 

Wood has said that even though the case involved the experience of just one client, the investigation raises “systemic issues” about the quality of care and respect for human rights.

The Maher Center has 16 licenses, according to the EOHHS spokeswoman. They cover: 

• 12 residential licenses (1 for each residential home)
• 1 agency license (the corporate “overall” license/oversight license)
• 2 center based day program licenses (for non-residential day programs)
• 1 service license (license that identifies all services that agency can provide)

Lack of Resources Underlies Problems with Supports Intensity Scale, Other RI DD Issues

photo by anne peters  

Eileen Vieira and Greg Mroczek both express concerns about the assessment used to determine funding for their adult children with developmental disabilities. 

By Gina Macris

The issue of resources – a scarcity of services and the money to finance them – ran like a thread through a public forum on Rhode Island’s developmental disability system Nov. 9 that brought together families, provider agencies and state officials. 

At the same time, participants applauded the willingness of new roster of state developmental disability officials to listen to their concerns.

Much of the discussion, during the meeting at the Cherry Hill Manor Nursing and Rehab Center in Johnston, concerned an assessment called the Supports Intensity Scale (SIS) that is used to assign individual funding packages to those persons receiving services.

“If there was adequate funding to pay for the needs” identified by the assessment, ”we would have much fewer problems with the SIS,” said Tom Kane, CEO of AccessPoint RI, a service agency.

“There’s not enough money there,” he said.

 Kane and others expressed skepticism about the accuracy of the assessment.

For example, Greg Mroczek said his son and daughter are very similar in their disabilities and needs, and yet they were assigned different funding levels.

“It flies in the face of the accuracy of the tool,” he said.

Eileen Vieira, who has a son with developmental disabilities, said some people who do the assessments “have no clue.”

They are not familiar with the person’s medical conditions or mental health issues or what is happening in the client’s life, she said. She said she did not believe the SIS captured her son’s need for behavioral support.

Heather Mincey, administrator in the Division of Developmental Disabilities, acknowledged that “a lot of times the SIS administrators did not get all of the information” necessary to make an accurate assessment of a person’s needs.

Heather Mincey

On Nov. 6, the Division switched over to a new form of the SIS which Mincey said she believes “will help a lot.” Called the SIS-A, the assessment is designed to capture behavioral and medical needs that were sometimes not apparent in results of the original SIS, according to Mincey. 

Kane said he has “never been a cheerleader for the SIS.”

The developer of the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD), maintains it differs from other assessments because it focuses not on shortcomings but on the supports an individual needs to be successful at a particular task.

Kane, however, said most family members and professionals in the field of developmental disabilities find it difficult to talk about the issues raised in the questions because “you have to examine what’s wrong” to arrive at the necessary supports.

“It’s a deficit-based tool,” he said.

A representative of AAIDD will visit Rhode Island to explain the SIS-A at an information and training session Nov. 17. (See related article.)

Mincey, meanwhile, encouraged parents to file appeals if they believe the SIS results for their sons or daughters are inaccurate – or if they have problems with a shortage of funds for transportation or other issues.

But Vieira indicated that the appeals are continuous and time-consuming, especially for parents who have full time jobs. “You have to appeal and you have to appeal,” she said. 

Brian Gosselin, Chief Strategy Officer for the Executive Office of Human Services, said developmental disabilities officials will use feedback from appeals of decisions on the SIS, along with experiences trying to solve other problems, to improve the system.

In whittling down a backlog of 224 applications for adult developmental disability services, for example, workers learned that nearly half the submissions did not contain all the required documentation, Gosselin said.  That experience will result in a redesign of the application process, he said.

Carla Russo

An independent court monitor in a federal consent decree mandating expansion of community-based services for adults with developmental disabilities has pressed the state to work through the backlog and identify all individuals aged 14 to 21 who might qualify for services after high school. 

One mother, Carla Russo, said her son left school in the 20013-2014 school year and still does not have adult services. 

Iraida Williams, an employee of the Sherlock Center on Disabilities at Rhode Island College, asked whether the application materials would be available in Spanish. Williams has appeared at several public forums on developmental disability services since April 2015, to ask the state to hire a Spanish-speaking social worker or interpreter who could field questions from non English-speaking families.

“That’s the type of feedback that we need,” Gosselin said.

tracey cunningham

Tracey Cunningham, Chief Employment Specialist at the Division of Disabilities, said 23 service providers have applied for a supported employment incentive program that is gearing up as a result of the consent decree.

Nearly every one of the 23 providers has talked about taking on new clients in the process, Cunningham said, although she didn't expect the program to begin operations until January.

If that many agencies do expand, it would be a significant shift from a system that has been in a holding pattern because of a shortage of funding. 

Cunningham said the Division of Disabilities also wants to hear from families who organize their own supports and might want to purchase supported employment services.

One mother, Mary Beth Cournoyer, said parents, who themselves have jobs, need to cover a certain number of hours of care for their sons and daughters and can’t afford to divert much, if any, funding to job development. 

Cunningham said that “we are looking” at the possibility of providing additional funding for supported employment services rather than requiring individuals to stretch their budgets.

Gosselin, meanwhile, said that state officials will be working with consultants from the National Association of State Directors of Developmental Disabilities Services for the next six months to try to come up with better ways to serve individuals and families and at the same time comply with new Medicaid regulations affecting individuals with developmental disabilities.

All photos by Anne Peters

Maher Center Disputes RI's Adverse Licensing Action In Formal Announcement of Appeal

By Gina Macris

The James L. Maher Center in Newport, RI., is “extremely disappointed” with “unsubstantiated conclusions” that it abandoned a young woman with developmental disabilities in its care at Newport Hospital last May, according to William Maraziti, the agency’s executive director.  

In a statement released Nov. 10, the agency says it has filed a formal appeal of an adverse licensing action taken by the RI Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. 

After a four-month inquiry, BHDDH investigators recommended in September that the department’s “licensing unit issue a conditional license to the James L. Maher Center,” according to their September report. 

By early October, licensing officials had followed through, according to a spokeswoman for the Executive Office of Health and Human Services. 

At the time, Jennifer Wood, the Deputy Secretary for Health and Human Services said that even though the case involved the experience of just one client, the investigation raises “systemic issues” about the quality of care and respect for human rights.

The findings demonstrated that the Maher Center is “not reliably following the rules and regulations” of the Division of Developmental Disabilities, Wood said. She said a conditional license, good for six months, is the equivalent of a probationary license.

But the Maher Center says that the “flawed investigation resulted in the downgrading to ‘conditional status’ the state license on one of the Maher Center’s 11 group homes.” 

“Recent media reports wrongly implied that the action was taken against the Maher Center’s agency license, which is the Center’s authority to provide services as a developmental disability organization,” the statement said. 

“By availing itself of the appeal process, the Maher Center intends to remove this unjust blemish on its 63-year record,” the statement continued. 

“We have never abandoned any of our participants – and certainly didn’t in this circumstance,” Maraziti said, calling the investigators’ report “inflammatory” and its allegations “without merit.”   

A spokeswoman for Wood confirmed in October that the Maher Center had begun the appeal process. 

The first step in the process is a meeting with investigators to determine if differences can be resolved, and the next step is a request for a hearing before an EOHHS hearing officer, according to the spokeswoman. 

The agency’s statement offered no details about the formal appeal, and through a spokesman, Maher Center officials declined to answer questions.   

RI BHDDH Corrects Contact Info For Next Week's Forum on SIS

The Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals has issued issued a corrected email address for those who wish to sign up for the public forum Thursday, Nov. 17, on the Supports Intensity Scale, the assessment used to set individual budgets for adults receiving developmental disability services. The BHDDH statement follows: 

Our apologies that the RSVP email address in our newsletter inviting you to the SIS-A Training was incorrect. The correct RSVP email address is BHDDH.AskDD@bhddh.ri.gov. 

Reminder --
We are holding an informational session with an AAIDD representative to help individuals and families prepare for this change and to answer questions. Details on this training are available below. Additional trainings will be planned for families and providers.

What: SIS-A Training and Information Session

When: Thursday, November 17, 2016 – 4:30 - 6:30pm

Where:  Arnold Conference Center, Eleanor Slater Hospital Regan Building, 111 Howard Avenue, Cranston, RI 02920

RVSP:  Please email BHDDH.AskDD@bhddh.ri.gov. We hope to see you there. 

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

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

By Gina Macris

This article has been updated

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

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

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

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

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

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

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

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

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

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

Toward a Smoother Transition: RI Will Decide Early, By Age 17, Who Will Qualify for Adult DD Services

By Gina Macris

(This article has been updated.) 

For some Rhode Islanders with developmental disabilities, the shift between high school and the adult world has been likened to falling off a cliff.

Now, changes are underway to lay the groundwork for a smoother transition from high school to adult living, the latest being a new policy that the state will accept applications from individuals aged 16 and will determine their eligibility by the time they turn 17.

But it remains to be seen how far the state gets in delivering on its promise to a federal court to find jobs for every eligible young adult who can and wants to work by next June 30.  

One potential problem is that, despite small raises recently granted to direct care workers, their employers still may not be able to hire the staff necessary to add new clients. 

New, slightly higher reimbursement rates to private service providers reflect the raises but do not address continuing shortfalls in overhead costs borne by employers, according to a spokeswoman for some two dozen agencies.

For years, private providers have had trouble recruiting and retaining competent staff. A new employment incentive program, with a few exceptions, requires agencies to use existing funding to train workers, if necessary, and make job placements before collecting one-time bonuses. 

According to evidence presented in U.S. District Court last April, young adults with developmental disabilities have been dismissed abruptly from high school on their 21st birthdays and have tended to sit at home for weeks or months because adult services were not in place.

Rhode Island law says individuals with developmental disabilities are eligible for adult services at age 18, although decisions on eligibility often have been made a few months before the young people turned 21.

With many agencies declining to accept new clients, families found it difficult and time-consuming to arrange services.

When services finally were pulled together, they often fell short of participants’ and families’ expectations, according to what U.S. District Court Judge John J. McConnell heard in April.

Since the April hearing, the General Assembly has enacted a law sponsored by the Senate Finance Committee chairman, Daniel DaPonte, that requires school districts to keep those 21-year-olds in class until the end of the academic year.

More recently, the Executive Office of Human Services (EOHHS) has updated plans to better identify, enroll, and serve young adults eligible for developmental disability services provided by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Office of Rehabilitation Services (ORS). Those plans include the new “eligibility determination by 17” policy.

In a dramatic departure from past practice, parents of youngsters who are likely to be eligible will be encouraged to apply for adult services when their sons and daughters turn 16.

Consent Decree Drives Change

The changes respond to requirements of a 2014 federal consent decree which aims to move adults with developmental disabilities out of sheltered workshops and segregated day programs that violate the Olmstead decision of the U.S. Supreme Court.

In 1999, the high court found that services for individuals with disabilities must be provided in the least restrictive environment that is therapeutically appropriate, with that environment presumed to be the community.

During the latest judicial review of the consent decree in September, an independent court monitor, Charles Moseley, noted that since the consent decree went into effect in April, 2014, the state has failed to meet targets for placing young adults in regular jobs in the community, with the necessary supports. 

By July 1, 2016, the state was required to have placed all young adults who have left high school during the 2013-2014 academic year or later. At the time, 151 people were reported to be eligible, but the state’s total number of placements was 29.

Rather than hold a contempt hearing against the state, Judge McConnell has deferred to Moseley, who said was confident he could work with state officials to meet the employment goals.

Complicating the issue, the number of young adults in question has risen since July from 151 to 259. The Rhode Island Department of Education (RIDE) has updated its count of individuals with developmental disabilities who left school during the 2015-2016 school year and will continue to do so through June 30, 2017.

RIDE also has promised to expand the categories of individuals whose names it reports to BHDDH to more accurately reflect the total population of young people likely protected by the consent decree, according to Moseley’s most recent report to Judge McConnell Nov. 1.

Since the consent decree went into effect in 2014, RIDE has reported to BHDDH only the names of those with developmental disabilities who turn 21 and leave school.

Going forward, its count will include all those between the ages of 14 and 21 who have developmental disabilities, autism, or multiple disabilities that can be expected to restrict their ability to function independently as adults. The monitor wants RIDE to identify all those students by Nov. 15.

In the meantime, BHDDH, ORS, and RIDE will work together to notify all affected families of their protected status under terms of the consent decree and give them information about applying for services. (Click here for eligibility criteria in state law.) 

General Assembly Increased DD Budget

To shore up the state’s ability to provide services once adults are found eligible, the General Assembly has approved an hourly wage increase of 36 cents for direct care workers – a total of $5 million – and allocated another $6.8 million to foster supported employment.

In addition RI Senate leaders have said they want to raise the current average wage of front line workers from $11.18 to $15 an hour over five years.

But the state still faces continuing consent decree deadlines for placing adults with developmental disabilities in jobs, including about 50 former sheltered workshop employees by Jan. 1, as well as a yet-to-be–determined number of eligible young adults by June 30.  

The new $6.8 million supported employment program expects to begin disbursing funds in mid-November, according to an EOHHS document attached to Moseley’s latest filing with the court.

The program requires providers to have specially-trained employment teams in place to quality for the program and begin receiving a series of one-time bonuses. The bonuses reward the certification of employment specialists, job placements, and job retention for six months with totals that vary from about $3,500 to $15,750 per person, depending on the client’s age and the complexity of the disability.

The recent wage increases

The recent wage increases cover payroll–related taxes but do not add to the state’s reimbursement to private agencies for other aspects of employee overhead costs-taxes. Nor do the raises increase the pay of front-line supervisors or mid-level managers, according to Donna Martin., executive director of the Community Provider Network of Rhode Island, an association of 26 agencies.

Martin says the state allows agencies  35 percent of direct care workers’ salaries for such overhead costs, but CPNRI data “shows actual employee-related expense is in excess of 60 percent.”

Last spring, she told the General Assembly that her membership operates at an average loss of $5,500 a year for each employee.

do not change state’s reimbursement to private agencies for employer-related taxes and other costs, according to Donna Martin, executive director of the Community Provider Network of Rhode Island, an association of 26 agencies.

Last spring, she told the General Assembly that her membership operates at an average loss of $5,500 for each employee.

Because many agencies are not expanding their staff or accepting new clients, the parents of newly-eligible young adults increasingly are turning to so-called “self-directed” services, which allow them to design customized programs for their sons and daughters, a time-consuming process. The parents are responsible for organizing a program within their budget and choosing and supervising workers. A fiscal intermediary pays the bills.

BHDDH is encouraging these “self-directed” providers, as well as the established agencies, to apply for the one-time supported employment bonuses.  

The next opportunity for consumers and families to speak to state officials about the consent decree and developmental disability services in general is Wednesday, Nov.9 from 4 to 6 p.m at the Cherry Hill Manor Nursing and Rehab Center, 2 Cherry Hill Rd., Johnston.  

Judge McConnell has scheduled his next review of the consent decree for January 27 in U.S. District Court, Providence.

(The original version of this article inaccurately stated that recent raises to direct care workers did not include an increase for any aspect of employer-related costs.)  

Public Forum on DD Services in RI Scheduled For Nov. 9 at Cherry Hill Manor in Johnston

By Gina Macris

Rhode Island officials will explain continuing changes in the state's developmental disability service system during a public forum Wednesday, Nov. 9, from 4 to 6 p.m. at the Cherry Hill Manor Nursing and Rehab Center, 2 Cherry Hill Road, Johnston.

The meeting will include updates on the search for a director of the Division of Developmental Disabilities as well as details of efforts to implement provisions of a federal consent decree calling on the state to end segregated daytime services that violate the Americans with Disabilities Act.

In addition, state officials will describe technical assistance the state receives from the National Association of State Directors of Developmental Disabilities Services (NASDDDS). The state has asked the organization for guidance in implementing a shift to community-based services, with an emphasis on supported employment, as required by the consent decree.

The application process for adult developmental disability services and the assessment used to assign individual funding to those found eligible also will be reviewed, according to an announcement from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Individuals who need interpreter services for the hearing impaired or need other accommodations for the meeting are asked to call Emily Limoges at 401.462.3405 or email her at Emily.Limoges@bhddh.ri.gov before Monday, November 7th.

Consumers and their families will have an opportunity to ask questions at the meeting.  The forum, the third to be held this year, represents part of the state's promise to the U.S. District Court, the U.S. Department of Justice, and an independent court monitor to improve communications with the public about the consent decree. BHDDH officials also will give an overview of the department's recently-revamped website at the meeting.

In the meantime, the Division of Developmental Disabilities has released contact information for those who wish to call or email the division directly concerning service-related issues.  

• For funding authorizations, call Donna Phillips at 401-462-1833 or email her at Donna.Phillips@bhddh.ri.gov

• For transportation issues, call Deborah Mazzone at 401-462-3231 or email her at Deborah.Mazzone@bhddh.ri.gov

• For social services, call Heather Mincey at 401-462-3421 or email her at Heather.Mincey@bhddh.ri.gov

• For employment, call Tracey Cunningham at 462-3857 or email her at Tracey.Cunningham@bhddh.ri.gov

RI Senate Leaders Launch Drive to Raise DD Workers' Pay to $15 in Next Five Years

By Gina Macris

DiPalma outlines Plan for $15 hourly wage in five years

Rhode Island Senate leaders have announced a five-year drive to lift wages of caregivers for adults with developmental disabilities to $15 an hour, with the chairman of the Senate Finance Committee saying Oct. 28 that the existing labor force is “so tenuous it is on the verge of collapse.” 

At a press conference in Warwick, Sen. Louis DiPalma, D-Middletown, the architect of the plan, said it would start with an additional $6.8 million in Medicaid funding – half of it state revenue- in the fiscal year beginning July 1, 2017. 

The plan also calls for legislation that would commit the state to additional wage increases in each of the following four fiscal years, although the total cost has yet to be determined, DiPalma said. 

The General Assembly added $5 million in Medicaid funding to the current budget late in the 2016 legislative session, under pressure from Governor Gina Raimondo and from a federal court order reinforcing a consent decree mandating integration of individuals with developmental disabilities. 

The U.S. Department of Justice and an independent court monitor had expressed concern that low salaries prevented service agencies from attracting workers with the necessary skills to implement the consent decree. 

The $5 million added to the current budget – including $2.5 million in state funds - raises the average worker’s hourly wage by 36 cents, from $10.82 to $11.18, according to DiPalma. The $6.8 million in the next budget would add another 76 cents, for a new average hourly rate of $11.94, he said. 

Similar yearly hikes would be needed during the following four years to reach $15 an hour, DiPalma said, although the increments do not have to be evenly divided as long as the state reaches the goal by July 1, 2021, the start of the 2022 fiscal year. 

He plans to introduce legislation in the next session of the General Assembly calling for raises over multiple years. 

The effort has the support of the Senate President, Teresa Paiva Weed, and the Senate Finance Committee Chairman, Daniel DaPonte. DiPalma is first vice-chairman of the Senate Finance Committee.

 Late Friday, David Ortiz, press secretary to Governor Raimondo, said that while the current budget gave workers their first raise in several years, “we must do more to stay competitive with neighboring states. “ 

“The Governor looks forward to partnering with Senator DiPalma and Senate President Paiva Weed to continue to invest in better outcomes for families and help ensure all of our workers can make it in Rhode Island,” Ortiz said. 

Massachusetts has agreed to pay personal care attendants a minimum of $15 an hour by 2018.  Enacted in 2015, it was the first such state-wide agreement in the nation. 

New York recently adopted legislation spelling out a multi-year plan to phase in a $15 minimum wage for all workers, with different schedules for various regions of the state. 

In a statement in Warwick Friday, DaPonte said that DiPalma’s plan “addresses an important part of the wage inequity problem, and helps improve outcomes for the individuals they serve. 

“At the same time, we need to continue to review the methodology for compensating all those direct care workers who serve our children, homebound elderly, and individuals with disabilities through other types of provider agencies,” he said. 

During the press conference at West Bay Residential Services on Knight Street, DaPonte talked about a constituent who approached him at his son’s soccer game and complained that his recently-widowed, elderly mother was not receiving the 20 hours of home care to which she was entitled. 

The constituent wanted DaPonte to introduce legislation to require home health aides to show up on the job. 

But DaPonte said he told the man that the workers were so poorly paid the agencies “can’t find people to show up.” 

“Now we’re at the point where the system is so tenuous it’s on the verge of collapse,” he told an audience of about 50 that filled a conference room at the headquarters of the agency, which specializes in support for individuals with significant physical limitations.  

Data shows Pay Inequities, Particularly for Women

DiPalma’s plan emerged from a four-month long study that showed stark inequities in the pay of direct care workers since the General Assembly cut a total of $26 million from the developmental disability budget in the fiscal year that began July 1, 2011. 

With that sweeping action, workers saw double-digit pay cuts, to an average of $10.65 an hour, according to DiPalma’s data. At the time, the minimum wage was $3.25 lower, or $7.40 an hour. 

Since then, however, the state’s minimum wage has increased 30 percent, to $9.60 an hour, while the average pay of direct care workers has remained stagnant. 

In the fiscal year which ended June 30, Rhode Island’s direct care workers made an hourly average of $10.82 an hour, while those doing comparable work in Massachusetts were paid $13.02,  and those in Connecticut made $12.19, according to statistics from the U.S. Department of Labor. 

The figures pertain to employees of private agencies providing direct care. In Rhode Island, a parallel, state-run system pays its entry-level workers $17.15 an hour, for an annual salary of $35,668. These workers also get thestate employee benefits package, according to DiPalma’s statistics.  

With longevity, the average direct care worker in the state system makes $42,278 a year, he said. 

DiPalma also presented the results of a 2015 survey of direct care workers conducted in 2015 by the Community Provider Network of Rhode Island, an association made up of most of some three dozen private agencies in Rhode Island that serve about 4000 adults with developmental disabilities. 

With 1,439 responses, the survey found that:

•  More than half the workers were female heads of households
• · Many received food stamps and other government assistance geared toward low-income workers
• ·87 percent worked fulltime
• ·41 percent worked more than one job to make ends meet
• · 62 percent said they want to leave the developmental disabilities field because of the low pay 

The turnover among employees of private agencies is 33 percent a year, three times the turnover rate of 11 percent in the parallel state-run system, according to DiPalma’s study. 

Higher wages would mean greater stability and improved performance in the workforce, DiPalma said. 

Picking up where DiPalma left off, the director of the Sherlock Center on Disabilities at Rhode Island College said research shows those two factors correlate with a better quality of life for the recipients of support services. 

Anthony Antosh said a better quality of life is measured by improved health and safety, more interpersonal relationships and greater self-determination among individuals with developmental disabilities. 

Jim Petrone works his communication board

Jim Petrone, who receives support from West Bay Residential Services, used a communication board to tell the audience that he could not have made it through a health crisis in 2015 without the support of his staff and family. 

“Now I have a second chance at life,” he said. 

Diane Scott, who has worked at West Bay Residential Services for 26 years, reminded the audience that those who provide direct care come to learn the most intimate details about a person’s life. 

“Imagine,” she said, “if staff showered you or bathed you.” 

“No sooner do you decide to trust these staff than they continue to leave. Regulars work extra hours to compensate for yet another staff vacancy,” Scott said. 

Antosh said direct care workers should be treated not as short-term custodial staff but as professionals, who are on a career ladder, and who provide comprehensive support to people with very complex needs.  

THREE-STATE COMPARISON OF MINIMUM WAGE AND HOURLY RATE FOR ATTENDANTS

CHART COURTESY OF RI SENATE 

RI Advocates in Action To Hold Statewide Conference Oct. 27; Registration Extended

By Gina Macris

Rhode Islanders with intellectual or developmental challenges who have questions about the services they receive will get a chance to speak with state officials during the annual conference of Advocates in Action Thursday, Oct. 27, at the Crowne Plaza Hotel in Warwick. 

The question-and-answer session is one of many workshops and presentations during the day-long conference, which is aimed at empowering individuals with developmental disabilities to speak up for themselves. 

Entitled “Nothing About Us Without Us,” the conference will include workshops on topics such as competitive employment, community integration, voting, tax-free savings accounts for individuals with disabilities, and dating. 

At a town hall-style forum in the afternoon, Mary Madden, the state’sConsent Decree Coordinator, will take questions from the audience. 

Madden, a representative of the Executive Office of Health and Human Services, oversees implementation of a federal consent decree that requires the state to shift from sheltered workshops and segregated day programs to supports for community-based jobs and other activities. 

An official of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals is expected to join Madden, but the name of the official had not been confirmed Friday, according to a departmental spokeswoman.   

The conference will wind up with a masquerade dinner-dance. 

Conference registration has been extended through Monday, Oct. 24, for participants, including support staff and family members, according to Deb Kney, state director of Advocates in Action.  Updated instructions for registration are on the Advocates in Action website here.

RI Clears Backlog in Applications For Adult Developmental Disability Services

By Gina Macris 

(This article has been updated.)

Rhode Island’s Division of Developmental Disabilities has cleared a backlog of more than 200 applications for adult services, and eligibility workers are now adhering to a 30-day timeline for screening applications, in accordance with a schedule submitted to the U.S. District Court. 

In the spring of this year, the U.S. Department of Justice and an independent court monitor in a federal consent decree case expressed concern that extensive delays in reviewing applications for adult developmental disability services has prevented teenagers and young adults from receiving supports to which they are entitled, in violation of the Americans With Disabilities Act. The backlog had persisted for years.

Over the summer, in response to an order issued by Judge John J. McConnell, Jr., officials of the Executive Office of Human Services(EOHHS) took the lead in streamlining the screening process for applications. 

Jennifer Wood, Deputy Secretary of Health and Human Services, promised the backlog would be cleared by Sept. 30. 

On that date, all 224 applications that had been pending for at least the previous two months had been cleared by the developmental disabilities eligibility unit, part of the state Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH),  according to a spokeswoman for the Executive Office of Health and Human Services (EOHHS). 

Of the 224 applicants who had been waiting for a decision on Aug.1, 106 were found eligible, 31 were deemed ineligible, and the remaining individuals were notified they either needed to submit additional information or schedule a face-to-face evaluation, according to the EOHHS spokeswoman, Sophie O’Connell. 

On Oct. 14, there were 35 pending applications, O’Connell said, and eligibility workers are now adhering to the 30-day time limit for screening applications, in keeping with a work plan submitted to the court over the summer. 

Individuals with intellectual or developmental disabilities are eligible for adult services funded by BHDDH at the age of 18, according to state law.                                                         

EOHHS released the following details about the timeline for deciding eligibility: 

• When the eligibility unit receives an application, it sends a letter of confirmation to the family/applicant, stating that it will be reviewed within 30 days. The timeline for decision making is shared with the applicant as well as contact information for any questions. 

• All applications are screened and reviewed within 30 days. Either they are decided in that period or held for additional information. 

• All applicants whose applications are held for additional information will be sent a letter identifying what information is needed. The applicants and their families will have 60 days to submit missing information. 

• If the additional information is not submitted within 60 days, the application will be withdrawn and the individual can reapply. 

O’Connell said the withdrawal will prevent incomplete applications from sitting for extended periods of time, in some cases years, waiting for documentation, as had been the case in some instances in the past. 

 (The original version of this article said in error that 137 applications had been approved.) 

RI Puts Maher Center in Newport on Probation; Agency Files Appeal to Regain Full DD License

Steven and Jo-Ann DiBiasio's Daughter Plays the  Piano at Home in Cranston                                                                                                                          Photo by Anne Peters 

By Gina Macris

She was so excited about the prospect of attending a carnival on Easton’s Beach in Newport that she could not sleep, but hers was no ordinary insomnia.

The young woman, in the care of the James L. Maher Center of Newport, a developmental disability service agency, has a complex array of challenges on the autism spectrum and a rare chromosomal disorder.

Taken together, they give her a propensity for getting “stuck” on a single idea, unable to shift gears unless someone intervenes with a distraction in a light-hearted way. If her fixation goes uninterrupted, she can dissolve into a swirl of frustration, fear and anger.

That’s exactly what happened early on the morning of May 3. Police dispatched a cruiser to the group home where she lived, at 228 Carroll Ave., for a report of an “out of control 24-year-old female.”

She was taken away in the back of the police car to the emergency room of Newport Hospital. The Maher Center abandoned her there, “effectively leaving her homeless,” according to a recently concluded investigation by Rhode Island’s developmental disability agency.

As a result of 16 adverse findings connected with the woman’s care, the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) recently downgraded the Maher Center’s license to “conditional,” putting the agency under heightened oversight for a six-month probationary period, according to Jennifer Wood. The decision was conveyed to the agency in a letter dated Sept. 14. 

Jennifer Wood, Rhode Island’s Deputy Secretary of Health and Human Services, says BHDDH will conduct another evaluation in six months to determine whether the full license should be restored, continued for another six-month probationary period, or terminated.

William Maraziti, CEO of the Maher Center, said by telephone that the agency disagrees with most of the findings in the BHDDH investigation but declined substantive comment.

The Maher Center, which serves about 300 families in Newport and Bristol Counties, has appealed the decision. The state’s heightened monitoring of the agency will continue during the appeal, according to a spokeswoman for Wood.

May 3 marked the sixth time in the previous nine months that the young woman had been taken to the hospital for behavioral issues.

After the third hospitalization, at the end of October, 2015, the Maher Center gave notice that it wanted to terminate services. However, the agency had an obligation to work with the client indefinitely until a new provider could be found, according to state regulations. 

The woman, now 25, is the daughter of Steven and Jo-Ann DiBiasio of Cranston. She is one of three girls the couple originally took in as foster children and later adopted. The DiBiasios asked that their daughter not be identified by name to protect her privacy. 

 DiBiasio       Photo by Anne Peters  

In what Steven DiBiasio describes as the “tsunami” that occurred May 3, he and his wife learned that police had taken their daughter to the emergency room during a surprise call from a hospital official, who had been trying to reach the group home and had dialed their Cranston telephone number by accident.

He said he and his wife dropped everything and drove to Newport. DiBiasio said he learned that no one from the group home had accompanied his daughter to the hospital. Later, he said, he received a call from a Maher Center employee, who said the group home would not take his daughter back.

Nor did she have the favorite things that brought her comfort, including a Minnie Mouse doll she asked for repeatedly while the family waited at the hospital for a 2 p.m. appointment with the young woman’s psychiatrist, DiBiasio said.

Before the family left Newport that day, DiBiasio said he picked up his daughter's Minnie Mouse and a few of her other belongings at the Maher Center’s administrative offices on Hillside Avenue.

He said he saw her bags on the floor in an office and picked them up. but a Maher Center employee also grabbed them. Maraziti, the Maher Center executive director, came out of his office and asked the employee to let go, according to DiBiasio. 

Maraziti also called police to report an assault by the “parent of former client,” but police brought no charges, according to the police report.

The DiBiasios took her home to Cranston, where she has lived ever since. The first night she was home, she slept in her parents’ bed, clinging to her mother, something she had never done.

After she returned to Cranston, her daughter was aggressive, a tendancy that was not apparent before she went to live in the Newport group home in the summer of 2014, Jo-Ann DiBiasio said. 

Chronic sleep deprivation has once again become a way of life for the DiBiasios, both of whom have health problems that make it difficult for them to keep up physically with a young adult who needs constant supervision.

Jo-Ann DiBiasio Photo by Anne Peters

 For the first two months, the young woman received no developmental disability services.  Jo-Ann DiBiasio took an unpaid leave from her job during that time to make up for the lack of support and to put extra effort into behavior management techniques to decrease her daughter’s anxiety and anger.

In July, the young woman started getting daytime support services from a new agency, DiBiasio said, but there are no residential prospects on the horizon. 

 The investigatory arm of BHDDH started looking into the case the day after the woman’s parents took her home from Newport Hospital, when the quality improvement unit received a complaint of a human rights violation.

The investigators’ report was signed by Eileen Marino,  Associate Administrator of the Office of Quality Improvement.

The findings demonstrated that the Maher Center is “not reliably following the rules and regulations” of the Division of Developmental Disabilities, Wood said.

Even though the case involves the experience of just one client, the investigation raises “systemic issues” about the quality of care and respect for human rights, Wood said.

Another woman who lives at the same group home told BHDDH investigators that staff “put her down,” that an employee yelled at her in front of housemates, and that no action was taken when she told the house manager about the incident.

In the case of the DiBiasios’ daughter, the investigators found that the group home staff failed to follow proper de-escalation techniques spelled out in a 14-page behavioral support plan – a script of strategies intended to help the young woman keep herself on an even emotional keel.

The staff also failed to follow proper procedures for administering medication on an "as needed" basis, according to the findings.

If the behavioral and medication procedures had been followed, the investigators concluded, the ensuing incident might have been avoided.

According to the BHDDH findings, the staff of the group home simply told the young woman to go back to bed when she became agitated in the middle of the night.

In the next few hours, she was given an anti-depressant and she also was restrained, according to the BHDDH report. It said the group home staff called 911 at 7:37 a.m. The findings did not say whether or not the restraint was warranted, but investigators did say it was not properly recorded. 

The investigators found numerous violations of state regulations, some of them procedural, such as:

•       The Maher Center failed to provide the reason for its decision to cut off services to the young woman.

•       The agency failed to provide the young woman and family with information about their right to appeal the decision.

•       The Maher Center failed to work with the client and family to keep services going on an ad-hoc basis until a new provider could be found, so that there would be no interruption of services.

 •      The Maher Center failed to respond to an investigator's request for a copy of its policy regarding situations in which clients are taken to the hospital. 

The DiBiasios’ struggle to find 24-hour support for their daughter played out during a long-running fiscal drought in developmental disability services that continues today, despite an $11-million-increase in the current budget for daytime programs.  

 In July, 2012, the young woman marked her 21st birthday and the end of high school special education.  She experienced a “tremendous drop” in the frequency and variety of activities through adult services available from BHDDH and she became severely depressed, Steven DiBiasio said.

Six months later, in December, she dialed 911 herself and ended up at Butler Hospital.

All her caregivers at the time concurred that she needed 24-hour care, according to DiBiasio.

In March, 2013, officials identified the Carroll Avenue home in Newport, located just a few steps from the fabled Ocean Drive. But it was more than a year and a half, on Aug. 1, 2014, before the young woman was able to move in.

In all that time not one other agency operating group homes in Rhode Island offered to take the DiBiasios’ daughter. 

Some providers are known for their expertise in autism, but almost all agencies in Rhode Island have closed their doors to new clients, saying they operate at a loss for each staff member they must hire.

The issue of the providers' capacity to take on new clients surfaced briefly, without reference to any particular family, at a recent statewide meeting of community-based organizations focused on developmental disability services. 

Donna Martin, executive director of the Community Provider Network of Rhode Island , said “a lot of organizations are saying they don’t have the capacity to provide community-based services.”

“A lot of people are conflicted”  between a desire to serve the needs of the newcomers and “the commitment to people they’ve had for many years,” she said.

CPNRI has 23 member agencies which serve about 3500 individuals, most of the adult population with developmental disabilities in Rhode Island.

Before their daughter went to live in the group home at 228 Carroll Ave., the DiBiasios said, they were told the Maher Center planned to develop an expertise in serving individuals with autism, and that their daughter would be the first client in that new program.

While the young woman had been waiting to move to Newport, her parents took her out frequently to movies, bowling, restaurants, and other activities which she enjoyed.With support, she became a volunteer “play partner” at the children’s play and exploration area of Roger Williams Park Zoo, Steven DiBiasio said.

The DiBiasios said they told the Maher Center that they wanted the visits to the zoo to continue, along with other community-based daytime activities.

When they were told that transportation from Newport to the zoo in Providence might be an issue, Steven DiBiasio donated a 2004 Toyota Corolla to the Maher Center so that the transportation barrier would be removed.  BHDDH has ordered the car to be returned to the DiBiasios.

Both Jo-Ann and Steven DiBiasio said they fervently wanted the placement to work.

228 Carroll Ave., Newport                                                Photo By Brian C. Jones 

Within six months after their daughter moved to Newport, the DiBiasios say, they were informed that the Maher Center had abandoned plans for the autism program.

BHDDH authorized funding for two staff members to devote their full attention to the young woman, beginning in October, 2015, but investigators found the Maher Center did not utilize the money. 

Steven DiBiasio said his daughter spent most of her daytime hours in the Maher Center’s day program and the rest of her time at the group home, largely shut off from the sights that had attracted her to Newport in the first place.

DiBiasio said the visits to the zoo were far and few between and eventually stopped, for reasons he was told ranged from“lack of adequately trained staff to the client’s unsafe behavior,” according to a letter of complaint he sent former BHDDH Director Maria Montanaro in late April, about a week before the incident on May 3.

Investigators faulted the Maher Center for failing to provide adequate staffing, “resulting in her inability to access the community,” including the zoo, as outlined in her individual support plan.These plans form the bedrock of supports tailored to individualized state funding.

BHDDH also said the agency failed to adequately communicate with the parents, who are the woman’s guardians.

Over time, the DiBiasios became concerned about the amount of prescribed medication administered to their daughter, particularly in light of her genetic disorder, a duplication of chromosome 15, which can make it difficult for her liver to tolerate too many drugs.

In March, 2016, Jo-Ann DiBiasio wrote the Maher Center nurse, saying that her daughter “is no longer able to talk to me on the phone

the way she had in the past. She is constantly yawning and obsessing” about the things she used to do with her family, the mother wrote.

When she asked her daughter about her day, the young woman replied that she didn’t like the prescription medication she was given on an “as-needed” basis.

The mother asked the nurse for complete information on the times and doses of the medications since December, 2015, when a psychiatrist authorized their use on an as-needed basis.

The agency responded to the email but did not answer the questions, according to investigators.  As a guardian, Jo-Ann DiBiasio has a legal right to her daughter’s medical records.

Today, the young woman takes less medication on a daily basis than she did when she was living at the Maher Center group home, Steven DiBiasio said. In the four months since she moved back into her parents' home, she has had no emergency visits to the hospital, he said.  

For ninety minutes twice each week, accompanied by support staff, she volunteers at a child care center. There have been no incidents, he said.   

On a recent Saturday in Cranston, the DiBiasios’ daughter took a visitor by the hand into her house and offered a seat, as if she were leading a a guided tour. She asked her guest a number of questions about herself and her car, and inspected the newcomer’s car keys.                         

The questions allow her to process information in a way that decreases anxiety, Steven DiBiasio explained.

At the kitchen table, the young woman played with a laminated word-and-picture puzzle that had her distinguish the difference between a question and a statement. 

The laminated poster board was fixed with velcro to receive one punctuation mark or another to complete a particular sentence. It is just one of the materials Jo-Ann DiBiasio has created to help her daughter with communication.

When she needed to move on to something else, her parents and two sisters helped her find a new activity, while one of the family dogs followed and the cat lounged on a high perch, taking it all in.

After a while, the young woman, who has perfect pitch, gave a brief demonstration of her skills on the piano and guitar.

When the talk turned to Newport, she said she still misses the excitement of the City-By-The-Sea.

(An earlier version of this article incorrectly said that DiBiasio retrieved none of his daughter's belongings from the administrative offices of the Maher Center on May 3.) 

Rhode Island DD Council to Focus on Plans to Launch Family Advocacy Coalition Saturday

By Gina Macris

The Rhode Island Developmental Disabilities Council will devote its day-long annual meeting Oct. 15 to the issue of family advocacy, featuring discussions led by two officials central to implementation of the 2014 federal consent decree in the so-called “sheltered workshop” case.

Charles Moseley, the U.S. District Court Monitor in the case, and Jennifer Wood, Rhode Island’s Deputy Secretary of Health and Human Services, will speak throughout the morning on ways to establish and sustain a statewide family advocacy coalition for individuals with developmental disabilities. Wood also will speak during the afternoon session.

The Developmental Disabilities Council plans to launch a family advocacy coalition which would become independent in the next few years, as the state shifts from segregated daytime programs for individuals with developmental disabilities to integrated, community-based services, with emphasis on supports needed for employment.

The change is driven by the Olmstead decision of the U.S. Supreme Court, which ruled in 1999 that services must be provided in the least restrictive setting that is therapeutically appropriate to comply with the Americans With Disabilities Act. 

Saturday's meeting is open to the public. It will be at the Radisson Airport Hotel, 2081 Post Road, Warwick, from 8:30 a.m. to 4 p.m. Officials of the Developmental Disabilities Council ask that those planning to attend r.s.v.p.at the following email address: riddc@riddc.org. Anyone without access to a computer may call the Council office at 401-737-1238.

Click here for the complete agenda.

Friends of the Disabled to Hold Forum in Newport on DD Services in Rhode Island

By Gina Macris

Friends of the Disabled, organized by Newport County families who have members with intellectual or developmental disabilities, will host a forum on the future of Rhode Island’s disability service system Wednesday, Oct. 5, from 5 to 8 p.m. at the Newport campus of the Community College of RI. 

Candidates for the General Assembly have been invited to attend and address several questions about adult services that are provided by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), according to Chris Semonelli of Middletown, co-director of the group.  

Most of the issues of concern to the parents are related to a history of declining funding.  The General Assembly, under pressure from the U.S. Department of Justice, the U.S. District Court, and Governor Gina Raimondo, added about $11 million to developmental disabilities for the current fiscal year to comply with a federal consent decree requiring community-based employment and day services. 

Wednesday's program will cover current and future options for both daytime and residential services. 

The consent decree does not apply to residential services, although parents have expressed concern about the future availability of group home placements, which have been hard to come by in recent years. 

Since January, BHDDH has been emphasizing shared living arrangements, in which adults with developmental disabilities live in private homes. BHDDH should provide better supports to families providing shared living, according to Jane Gallivan, who until Sept. 30 served as Interim Director of Developmental Disabilities. 

"Listening Session" in RI to Solicit Public Comment on Prospective DD Director and Pressing Issues

By Gina Macris

Rhode Islanders using adult developmental disability services and their families will have a chance to weigh in on the qualities they would most like to see in the state’s next Director of Developmental Disabilities at a “listening session” Wednesday, Oct. 5 at the Rhode Island Public Information Network (RIPIN) in Cranston.

Participants also will be asked to identify high-priority issues the new director should address immediately.

The meeting will be hosted by RIPIN and the state Department of Behavioral Health, Developmental Disabilities and Hospitals.

The session will begin at 5 p.m. in the RIPIN offices at 1210 Pontiac Ave., Cranston. There will be reserved seating, because of limited space, according to a RIPIN statement. 

Seats may be reserved by contacting Sharon Kochan at skochan@ripin.org  or 401-270-0101 ext. 172 , according to the statement. 

The public also may send comments by email about the most important qualities in the new director to  BHDDH.askDD@bhddh.ri.gov. The application period for the director's post runs until Oct. 28.

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.

Judge, DOJ Praise RI's Compliance Efforts In DD Case; Contempt Hearing Avoided, For Now

By Gina Macris

The state of Rhode Island has done more in the last six months to comply with a federal consent decree aimed at ending the isolation of adults with developmental disabilities than the previous state administration did in the first two years of the agreement. 

That assessment came from the U.S. Department of Justice Sept. 16 in a conference on the status of the 2014 agreement before U.S. District Court Judge John J. McConnell, Jr.   

Because of those efforts, McConnell deferred, for now, a request by DOJ lawyer Nicole Kovite Zeitler that he hold contempt proceedings in early October over the state’s failure to hit specific targets in the order McConnell issued last spring to force compliance with the consent decree.

By signing the consent decree in 2014, the state promised, over a ten-year period, to establish a system of community-based, integrated work and leisure activities for individuals with developmental disabilities that would replace sheltered workshops and segregated day programs. The transition is mandated by the Olmstead decision of the U.S. Supreme Court.  

While acknowledging the state’s intensive efforts, led by Jennifer Wood, Deputy Secretary of Health and Human Services, Zeitler cited two non-compliance issues: the scarcity of young adults with developmental disabilities holding jobs, and the state’s failure to distribute increased reimbursement rates to private service providers by Aug. 1 as the judge had required.  

Wood said rate increases would be implemented Oct. 1. That is the date the computer system will be adjusted to reflect a 36-cent hourly increase, from $11.55 to $11.91, in the average reimbursement rate paid to private service providers.  

Approximately 4000 workers at private agencies will get raises, retroactive to July 1, after their employers start receiving the higher reimbursements. 

Mary Madden, the state’s consent decree coordinator, elaborated on the lack of job placements for young adults. 

Of a total of 151 individuals with intellectual disabilities who left school in the 2013-2014 or 2014-2015 academic years, 99 are receiving adult services, including 79 who are receiving employment-related services and 29 who are actually employed, Madden said. 

She did not have data for the 2015-2016 academic year. 

The employment number is “not where anyone wants it to be,” Madden said.   

Of the 151 identified, 52 individuals are not enrolled for any services. 

Later, Zeitler said the notion that 52 young adults have not been connected with adult services is a serious concern. 

Charles Moseley, the independent monitor in the case, said he wanted to echo both Zeitler’s concerns and her praise of the state’s efforts so far. 

He said he “wrestled with the idea of a show-cause hearing,” a proceeding that might lead to a contempt order, but decided against recommending it, because he believes the state can work with him to plan and provide employment services. 

While McConnell noted that a missed deadline in a judicial order is a serious issue, he deferred to Moseley’s confidence that he can work things out with the state. 

“I tend to be a ‘half-full’ kinda guy,” McConnell said, explaining his decision. 

“Some may call me Pollyanna-ish,” he said, but the compliance effort put forth by the state in the last six months “deserves a compliment and a thanks.”  

McConnell said state government doesn’t move quickly, even with court sanctions hanging over its head, as they were after McConnell issued a 22-point compliance order May 18. 

The fact that the Governor and the General Assembly acted late in the legislative season to add $11 million to the developmental disabilities budget should be acknowledged, McConnell said. He also thanked Health and Human Services Secretary Elizabeth Roberts, Deputy Secretary Wood, and her administrative team. About half a dozen of them attended the hearing.  

“We wouldn’t be here if it weren’t for the Department of Justice,” McConnell continued, praising its “tenacity and advocacy in taking on an incredibly complex task for those who wouldn’t otherwise have a voice.” 

But McConnell said he wasn’t about to unfurl a “Mission Accomplished banner” just yet.  

A report that the monitor filed with the court on the eve of the hearing outlines a plan to put the state on short-term deadlines for developing employment strategies for young adults and making sure all those eligible for services are identified. The employment-related strategies are due Oct. 1. 

 Moseley gave the state until Nov. 15 to identify all young adults who have left school in the last three academic years who are eligible for developmental disability services, but he wants to hear how it will approach that problem by Sept. 30. 

The effort will require cooperation by the state Department of Education, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, and the state Office of Rehabilitation Services. 

Moseley has expressed concern that the state is missing those who do not have an intellectual disability but are eligible because of a developmental delay.   Depending on the individual, a young adult on the autism spectrum may fall into the latter category. 

With the average cost of services at about $59,000 a year per person, Moseley’s directive for better identification of eligible young adults has the potential to add significantly to the developmental disabilities budget. 

For example, it would cost an estimated $3 million a year to serve the 52 young adults who have been identified but who are not enrolled in developmental disability services. 

Moseley, meanwhile, reflected on concerns expressed by the DOJ about the need for quality career development planning, a newly-implemented exercise that is intended to drive thoughtful, individualized job searches. 

“Person-centered planning, person-centered thinking, is a challenge that is facing all states. It needs to be done on an ongoing basis,” he said. 

Earlier in the hearing, Deputy Secretary Wood said the new chief employment specialist, Tracey Cunningham, had personally trained more than 200 people in how to write career development plans. 

But Moseley said it’s not a matter of one training. “You have to learn it and live it,” he 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.