RIPIN, RI DD Agency, Plan Virtual Town Hall on COVID-19

By Gina Macris

How should Rhode Island re-open its services for adults with developmental disabilities as the incidence of COVID-19 wanes?

The Rhode Island Division of Developmental Disabilities and the Rhode Island Parent Information Network have scheduled a virtual meeting on Zoom Friday, June 5, from 10 am. to noon to get public comment on the transition.

Pre-registration is required. To pre-register, click here.

During the registration process, attendees will be invited to choose to participate in one of three smaller group discussions for consumers and families, providers, or advocates.

Participants also may submit questions in advance to BHDDH.AskDD@bhddh.ri.gov 

Therap Gets RI Contract For DD Electronic Records

By Gina Macris

Therap Services of Waterbury, CT., a specialized information technology company, has won a contract worth $1,320,000 over three years, or $440,000 a year, to create an electronic case management system for the Rhode Island Division of Developmental Disabilities (DDD).

The conversion to electronic records is expected to make record keeping much simpler for state social workers and private providers and to greatly improve data collection for the U.S. District Court. Through an independent monitor, the Court is tracking implementation of integrated, community-based services for adults with developmental disabilities under provisions of a 2014 consent decree enforcing the U.S. Supreme Court’s Olmstead decision, which reinforces the Americans With Disabilities Act.

Kerri Zanchi, Director of Developmental Disabilities, could not say exactly how long the new system will take to roll out but estimated it might be 18 months to two years before it is fully implemented. Some parts of the system might be operational earlier, she said.

The electronic case management system will give state social workers and private service providers shared online access to the records of each client receiving federal and state-funded Medicaid services through the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Zanchi said Therap also offers a module to give families access to records, “but what it does and how we’ll use it, we’re not there yet. I couldn’t speak to that today,” she said in an interview in mid-September. A family module would not cost the state additional money, according to a spokeswoman for Zanchi.

Zanchi said DDD wants to build an electronic record system that responds to current operations and consent decree requirements.

“Our (DDD) system is changing and as it is changing we need to be evaluating the outcomes,” she said.

There is a work group which includes both state social workers and private service providers to help identify “the specific data needs” that must be built into the electronic records system, she said.

Rebecca Boss, the BHDDH director, said that “as much as we can do to expedite this, we will. We want to have this up and running as soon as possible.”

The lack of adequate data has made it difficult for the U.S. Department of Justice and the consent decree monitor to evaluate the state’s implementation efforts. About a year ago, the state devised an method of working around the limitations of the existing 30-year-old data system that can respond to specific questions from the monitor or the DOJ, but not on a real-time basis.

This patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College.

Therap and seven other vendors submitted applications for the electronic records contract in the fall of 2016. Zanchi and Boss said the contract was awarded at the end of the summer.

Therap also holds an electronic records contract for the investigatory unit of BHDDH, which deals with complaints of neglect and abuse. That contract was awarded in 2016, but no other details were immediately available.

Therap’s website describes the company as the leading provider of electronic health records for people with intellectual disabilities, with customers in 50 states and foreign countries.

This article has been updated with additional details on the Therap contract and those working with Therap to roll out the system. 

RI Still Lags in DD Consent Decree Compliance, But Shows Progress In Number of Job Placements

By Gina Macris

Rhode Island appears to be meeting almost 60 percent of court-mandated goals in placing adults with developmental disabilities in jobs paying at least minimum wage, according to newly-released figures which track the state’s progress through Sept. 30 of 2016.

The state had found jobs for 363 individuals, or 58.8 percent of the 651 placements required at that time, according to compliance figures the state submitted to an independent court monitor in accordance with a 2014 federal consent decree that requires community-based day services to correct violations of the Americans with Disabilities Act.

For one group of individuals protected by the consent decree- those in segregated day programs – the state has made triple the number of required placements. But for other groups, the going has been slower. Only about 22 percent of special education students "exiting" high school got jobs, far short of the 100 percent employment goal. The figures for a third group - adults who had been in so-called sheltered workshops – show 87 percent compliance with the benchmark for job placement at the end of September.

Source: State of Rhode Island 

Figures at the bottom of the table, set against a pale blue background, allow comparisons among the latest available job placement numbers Sept. 30 and those at the end of the first and second quarters of 2016.

It’s not surprising that the state does not meet overall compliance with the consent decree, Rhode Island began focusing on compliance only in the last 12 months – two years after the agreement went into effect,

In May, 2016, Judge John J. McConnell, Jr. of U.S. District Court reinforced the consent decree with an order addressing numerous shortcomings, including an inability to even get an accurate count of the number of individuals protected by the agreement.

McConnell required the state to create a “live” database, always up-to-date, on the population protected by the consent decree – at latest count 3,456 teenagers and adults – that the monitor and the U.S. Department of Justice could use to gauge compliance.

Such an up-to-the-minute database is in the works but has not yet been completed. In the interim, the  Executive Office of Health and Human Services has coordinated a cooperative effort involving three state agencies and the Sherlock Center on Disabilities at Rhode Island College to connect different sources of data so that the state can make detailed reports to the court, albeit with a time lag. The three state state agencies participating in the combined data effort are the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals; the Department of Education, and the Office of Rehabilitation Services.

The ten-year consent decree has progressively stiffer requirements, with the latest deadlines occurring Jan. 1. It is not yet known how well the state has done against these most recent benchmarks.

 Charles Moseley, the monitor,  has concluded that the state has “significantly improved its ability and capacity to gather, aggregate and analyze” data required by the consent decree.

Moseley submitted the state’s figures to McConnell March 3, supplementing two earlier reports. One made recommendations on stepping up job placements and other aspects of compliance. .The other made sweeping recommendations that would put emphasis on the needs of of individuals in the funding process for developmental disability services and would reorganize operations of the state Division of Developmental Disabilities to incorporate a seamless and continual quality improvement effort. Both reports have implications for greater costs.

All of Moseley’s recent reports are likely to come up during the next open-court hearing on the consent decree, now scheduled for 10 a.m. March 10 before McConnell. (Two hearings in January and February had been cancelled.)

The progress the state reported as of Sept. 30 reflect the efforts of privately-run service providers who for years have been working under significant financial and bureaucratic constraints that make it difficult for them to hunt for jobs for clients and support them once they find employment. 

Front-line workers make poverty-level wages, despite a pay increase approved by the General Assembly in 2016. The legislature also set aside $6.8 million to pay bonuses for new job placements and job retention and for specialized training completed by direct care workers. But that program was still on the drawing boards when the latest data was collected.

In his report on data, Moseley noted that the state did not reach goals for career development plans and benefits counseling. Benefits counseling is necessary to ensure individuals make informed choices about the way particular jobs would affect their government benefits, like supplemental security income (SSI.) Career development plans consider long-range goals, and the intermediate steps necessary to achieve them, in a way that aligns activities with individuals’ needs and interests.

Overall, about 43 percent of the entire consent decree population had career development plans. In one of the earlier reports to McConnell, Moseley was critical of the quality of those career development plans. 

Source: Charles Moseley, U.S. District Court Monitor

In the table above, "youth transition" refers to high school special education students likely to qualify for adult services, and "youth exit"refers to adults who have left school since 2013. Other categories refer to older adults who historically have been in segregated day programs or sheltered workshops. The letters CDP are an acronym for career development plan. 

Another table, below, shows that the state had complied with a requirement to provide benefits counseling to young adults with jobs but had failed to similarly advise more than half of older adults who had obtained jobs after 2012. The letters BP are an acronym for benefit plan.

Source: Charles Moseley, U.S. District Court Monitor

The state reported that those who had jobs worked an average of nearly 12 hours a week and made an average of about $10.00 an hour. The consent decree says the average work week should be 20 hours.  

The consent decree requires the state to integrate adults with developmental disabilities in their communities to comply with the 1999 Olmstead decision of the U.S. Supreme Court, which reaffirmed the rights of citizens with disabilities to receive services in the least restrictive environment that is therapeutically appropriate under provisions of the Americans With Disabilities Act. In Rhode Island in 2014, the U.S. Department of Justice found an over-reliance on sheltered workshops paying sub-minimum wages and on isolated day programs that did not offer their clients purposeful activities.

Click here for the monitor's data report.

Click here for the data the state submitted to the monitor.

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

By Gina Macris

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

Mary Madden                          File Photo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pat Abbate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monitor Wants Mountains of Details to Push Compliance With RI Olmstead Consent Decree

By Gina Macris

If the state of Rhode Island were building a network of roads to help adults with developmental disabilities get to their jobs, town libraries, or classes at the local Y, then construction could be described as well underway.

But that’s not to say the infrastructure is complete and travelers are rushing to use these new highways on their way to richer lives. 

This image of a work in progress serves, in effect, as a snapshot of what a federal court monitor sees in an ongoing transformation of the state’s developmental disability service system. 

In a recent report to U.S. District Court Judge John J. McConnell, Jr., Charles Moseley says Rhode Island has made solid gains in its efforts to comply with a 2014 consent decree enforcing the Olmstead decision of the Americans with Disabilities Act, which requires disability-related services to be offered in the least restrictive setting that is therapeutically appropriate. And that setting is presumed to be the community. 

The state has increased funding by $11 million, filled key leadership posts, offered more training, and put into place policies and programs to help adults with developmental disabilities find jobs and enjoy activities in their communities.

Priorities for Compliance 

 While acknowledging these efforts, Moseley indicated the state is still out of compliance with the consent decree. Among his top recommendations, Moseley said the state must:

• Strengthen supported employment for young adults up to the age of 25. Job placements for young adults are “significantly below consent decree requirements,” he said.

• Increase funding to expand supported employment and community-based, integrated day services during the next fiscal year, beginning July 1, and in future budgets. The state “needs to take steps to ensure additional funding is available to address caseload increases” related to special education students moving to adult services, he said.

• Increase providers’ capacity to provide services. “Provider agencies do not yet have the numbers of trained staff needed to ensure the provision of services and supports required by the consent decree” Moseley said.

• Eliminate service delays.

Moseley says the Division of Developmental Disabilities (DDD) and the Office of Rehabilitative Services (ORS) have said that service providers can meet the need for employment and community –based supports required by the consent decree.

“But families of individuals with IDD (intellectual or developmental disabilities) who are requesting DDD services for the first time have reported to the monitor that access to needed supports has been prevented or delayed by providers who refuse to accept new referrals,” Moseley said.

“Provider refusals appear to be directly linked to DDD payment rates and rate setting practices,” he said.

Twenty-two of the state’s 36 private service providers have agreed to participate in a program of one-time bonuses paid for staff training, job placements, and job retention, according to state officials. 

That initiative is still accepting applicants and cannot yet be evaluated, Moseley said, although it is expected to ease the service gap over time.

Moseley found it “important to note,” however, that the state has not offered any other kinds of incentives to agencies that chose not to apply to the incentive program, or to providers that did not receive start-up costs to convert sheltered workshops and day programsto community-based operations.

Moseley is asking the state to give him an accounting by Feb. 28 of the number of clients who were refused or faced service delays between July and December of 2016, including the names of the agencies, the reasons given, the length of any delay, and the state’s recommendations for improving access to services.

He also gave notice that he will want a similar report for the three-month period between January and March, as well as another update at the end of June to use as a guide in determining whether recent initiatives put into place by the state are having a positive impact.

State is Playing Catch-up

Moseley submitted a 48-page report to McConnell Jan. 25 in anticipation of a hearing Feb. 14 on the status of the consent decree.

The state’s positive momentum, supported by the $11-million budget increase, is all the more significant because most of it has been accomplished in the year since McConnell became personally involved in the enforcement of the consent decree in January, 2016.

After McConnell signaled he would take the bench on the case, the direct day-to-day supervision of the developmental disabilities division has shifted from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals to Jennifer Wood, Deputy Secretary of the Executive Office of Health and Human Services.

Even though Wood has put efforts to comply with the consent decree into overdrive, the state is still playing catch-up with the progressively stiffer requirements of the highly prescriptive agreement, which was marked by two years of inactivity at the outset.

The consent decree, signed April 8, 2014, has a ten-year term. At the end of 2015, seeing little progress, the U.S. Department of Justice and the court monitor asked McConnell to take the case under his wing.

During the most recent hearing, in September, 2016, the state avoided contempt proceedings for failing to hit two targets. One of them, the disbursement of raises for direct service workers, was accomplished Oct. 1. The other was the lag in employment of young adults – a problem that has only grown bigger.  At the same time, McConnell said he relied on Moseley to hold the defendant’s “feet to the fire.”

Moseley Wants More Information

Even at the September hearing, Moseley was digging deeper. He pressed the state to better identify young adults and high school special education students who should be counted as members of the consent decree population and enjoy protections designed to prevent them from living lives of isolation.

Moseley’s report relies on data available as of Oct. 31, but he says the state subsequently informed him that the count of young adults who left school since the 2013-2014 academic year has increased by 350, from 151 to 501. 

The report says 29 of these young adults have received job placements, a number that is more than six months old. The consent decree required “all” members of this group to have at least part-time jobs by July 1, 2016.

The monitor continues to press DDD, ORS, and the Rhode Island Department of Education (RIDE) for more detailed information on several areas of implementation where he sees the state lagging.

By Feb. 28, Moseley wants reports on:

 Staff Training

• a plan outlining how DDD and ORS will provide the monitor regular updates on appropriate training for direct service workers at various agencies who provide daytime services. The current number of trained staff statewide, 396, is too low, he says.

Average Hours Worked

• a plan and strategy for increasing the average number of hours per week worked by individuals in supported employment. The current weekly average, 8.6 hours, falls far below the average 20 hours specified in the consent decree.  Implementation of the plan should begin March 1, Moseley says.

Career Development Plans

• an umbrella “operational plan” for 1) expanding critically-needed training for professionals and families on career development,  2) ensuring more than 3,000 individuals protected by the consent decree have high quality career development plans by June 30, and 3) making provisions for regular updates to the monitor on this topic beginning April 1. Currently, 774 individuals have career development plans, according to Moseley’s data.  These plans are intended not only to describe individualized long-term goals, but to include strategies and a sequence of real-life activities for helping individuals work toward those targets. Moseley said there are signs such details are lacking from many existing career development plans.

High School Internships

• data from RIDE and ORS showing the number of high school special education students who participate in at least two trial work experiences, each lasting a minimum of 60 days. RIDE has indicated it is keeping track of these numbers but has yet to provide the monitor with the information, Moseley says.

• data from DDD showing implementation of a so-called “transition timeline”, including notifications to families and other activities involving special education students in high school that prepare them for adult living.

Benefits Counseling

• a report from DDD on how it will ensure individuals deciding on jobs receive counseling about the way their earned income might affect the government assistance they receive, as well as evidence that the counseling is covering the required information. The monitor found that only 65 people had benefits counseling last June 30, the latest date for which statistics were available.

Moseley also noted that the state has developed a process for individuals to seek a variance if they want to opt out of employment, but no one has applied for one. He said he have more to say about the variance process by the end of the month but wants recommendations from the state by March 31 on ways to improve the variance process.

Employment First Task Force

Moseley addressed the future of the Employment First Task Force, saying it “has the potential to provide an independent and meaningful role in supporting the ability of the State to accomplish the reforms identified by the consent decree." 

“But change needs to take place if the task force is to achieve its full potential,” he said.

The consent decree intends the task force as a bridge between the community and the government, or as Moseley put it, “an independent, voluntary group of advocates and stakeholders who are not directly involved in state agency operations.”

While the consent decree says the group should make policy recommendations, it doesn’t say what areas the task force should research, or to whom it should make its recommendations, said Moseley. He also noted that it has no administrative staff or oversight from any state agency.

Moseley said he wants some changes in the task force “without compromising the separate and independent voice of advocates and stakeholders.”

Ultimately, he wants the task force to make annual reports for the monitor, the state, and the public on barriers to implementing the consent decree and ways to overcome them.

Moseley called on EOHHS to give the task force some staff support. And he asked Kevin Nerney, the task force chairman, and Jennifer Wood, the Deputy Secretary of EOHHS, to convene a small work group to map out the respective roles and responsibilities of the state and task force members and to report back to him by Feb. 28. 

Click here to read the entire monitor's report.

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